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Parental perceptions of neonatal care
Journal of Neonatal Nursing (2007) 13, 199e206
www.intl.elsevierhealth.com/journals/jneo
Parental perceptions of neonatal care Jan Gavey* Neonatal Unit, James Cook University Hospital, Marton Road, Middlesbrough TS4 3BW, UK Available online 12 September 2007
KEYWORDS Parents; NICU admission; Family centred care; Care delivery
Abstract This qualitative study investigated retrospective experiences of parents whose infants (24e37 weeks’ gestation) required Neonatal Unit admission. Using semi-structured interviews, parents of 20 infants were recruited and 16 interviewed. Data analysis revealed several themes: Parental impressions, Care delivery; Impact on relationships and Parental control issues. Although parents generally found staff supportive and helpful, they highlighted difficulties they had experienced. Initial parental impressions and aspects of care delivery are presented here. Events preceding admission are often bewildering and unexpected. First impressions can be distressing and effective communication channels vital, if we are to allay parental fears. Recommendations include providing frequent updates for parents, Positive re-enforcement and support by staff as infants progress from intensive to special care and Provision of written information explaining the unique aspects of the neonatal environment. This small study provides insight into the experiences of a group of parents and valuable information for neonatal staff. ª 2007 Neonatal Nurses Association. Published by Elsevier Ltd. All rights reserved.
Introduction Historically, medical and nursing staff, increasingly supported by other specialities, have organised neonatal care, with parents as passive observers. As the responsibility of catering for infants of Lilliputian stature continues to challenge the profession, parental perceptions of their roles often remain unclear (O’Shea and Timmins, 2002; Raines, 1996), despite increasing beliefs in family centred and developmental care (Abdullah, 2004; Clayton,
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2000; Owens, 2001; Smith, 1999). With approximately 10% of deliveries requiring admission to the neonatal unit, (Euroking, 2006) not an insignificant number of parents experience the NICU environment each year and clinicians endeavour to make their NICU experience less frightening. (Lamy et al., 1997; Pearson and Andersen, 2001). Anecdotal evidence suggests complaints are fewer than in other health care specialities; a reflection, perhaps, of the family’s gratitude to the whole team for sending an infant home alive, if infant survival is the benchmark on which we are judged. With its increasing technology and participation in clinical trials, this alien environment is frightening to parents. (Saunders et al., 2003). Literature
1355-1841/$ - see front matter ª 2007 Neonatal Nurses Association. Published by Elsevier Ltd. All rights reserved. doi:10.1016/j.jnn.2007.06.001
200 has shown that parents feel a sense of loss, grief, uncertainty, role change and stress (Boxwell, 2000; Shields-Poe and Pinelli, 1997) and that mothers will ‘play the game’ (Fenwick et al., 2002) to ensure optimum care for their infants, following neonatal admission. Despite the scope of professional involvement and knowledge, parental participation and understanding is essential, otherwise the care delivery package is incomplete. Experienced neonatal nurses are aware of parental ‘highs’ as the infant’s condition improves and equally, their devastating ‘lows’ if uncertainty returns (Bloom, 2001). Health service provision, meanwhile, is increasingly under scrutiny from a consumer satisfaction perspective. Literature cites an increasing need for health care professionals to audit practices, measure customer satisfaction and investigate user involvement within the service. (Conner, 1999; Healthcare Commission, 2003; Department of Health, 2004; Thomas, 1999). The challenge is then, to seek ways in which we can demonstrate that we are doing a good job: That we have the ability to balance advances in medicine and nursing practices, whilst recognising parents as integral elements of the neonate’s care. Although literature exists citing parental experiences within NICUs, particularly the effect on mothers (Boyd, 2004; Doering et al., 2000; Holditch-Davis and Shandor Miles, 2000), this study aimed to explore parental experiences first hand, gain valuable insight and enable the multidisciplinary team to increase their understanding of parents’ needs and improve care delivery.
Methodology This qualitative research study was conducted to examine parental perceptions of neonatal care in one regional neonatal intensive care unit, using a semi-structured interview format. Once local hospital ethical approval was granted, over a 7 month period, parents whose infants were admitted to the NICU for more than 7 days and required a period of intensive care support, were eligible for consideration into the study. Infants who stayed less than 7 days, or had severe congenital abnormalities, were terminally ill or for adoption or fostering were not included. Such information would be equally valuable, but would require a more sensitive approach and more experienced researcher. Eligible parents were approached by the researcher pre hospital discharge/transfer and verbal consent sought. A combined parent’s information sheet and consent form was given, written consent subsequently obtained and
J. Gavey a provisional interview date set. A pilot interview was performed to test the interview format. A period some 4e6 weeks post discharge was suggested by former NICU parents as an optimum time for interview; memories were still fresh, yet some reflection/internalisation of the events would have occurred, as the researcher was keen to avoid memory decay (Hamilton, 2001). Parents were invited to describe their journey through the neonatal unit from admission to discharge. Regular contact was maintained where infants were transferred to local SCBUs, ensuring their discharge date was identified. All parents received a telephone call re-confirming their choice of interview date, place and time some 24e48 h pre-event. The study’s objective was to interview mothers and fathers, but on 4 occasions other relatives (3 grandmothers and 1 sibling) were present and contributed. A copy of the interview schedule was left with the parents. Each interview was tape recorded and transcribed verbatim, by the researcher. Field notes were written post interview. All personal details were anonymised to maintain patient confidentiality and the tapes kept in a locked drawer. In total a purposive sample of 20 sets of parents were recruited. Subsequently 4 sets did not go forward to interview: Three did not respond to attempts to contact them post discharge by telephone and letter, and one family had prolonged episodes of illness extending over several months. Sixteen interviews were therefore conducted: 10 in the parental home, 5 in a grandparent’s home and 1 in the hospital outpatient clinic. Of this sample group, 8 women were primigravida and 8 multiparous, 2 of whom had previously experienced early neonatal death (21 and 23 weeks respectively). The age range of the mothers was between 22e37 years. Of the 16 mothers who agreed to interview, 15 were supported by partners and one mother was unsupported at the time of delivery. All of the fathers were aware of the interviews and in total 9 were present. Amongst the infants were 1 set of twins and 15 singletons. Their gestational ages ranged from 24 to 37 weeks and birthweights between 600 3000 g. Their duration of stay on the neonatal unit ranged from 22 to 126 days and their reasons for admission were multifactoral. Fourteen of the infants were delivered in the local delivery suite (2 mothers having been transferred in from other localities). The remaining 2 mothers were delivered in their own hospital and their infants subsequently brought to the NICU by the neonatal retrieval team. An adaptation of Burnard, (1991) was used to identify and categorise emerging themes. A copy of the typed transcript was sent to each of the
Parental perceptions of neonatal care parents to validate the contents (Denscombe, 1998) and invite further comment. To date, none have been received. Several themes emerged from the data including preparation for delivery; parental impressions of the NICU; care delivery throughout maternal and neonatal hospitalisation; the impact the NICU had on relationships; and professional control vs. perceived lack of parental control. This article will consider parental impressions and care delivery within the sphere of early neonatal care.
201 ‘‘.to see them so helpless with all these wires in the incubator. it just breaks your heart.!’’ ‘‘She was like a shiny baby poussion . I had a tiny little chicken. She was just shiny and red and deformed with her arm and her talipes’’. ‘‘I think it’s quite sad really that you don’t have the elation of, you know, when you’ve had a baby and you see her for the first time.’’ ‘‘Nothing would prepare me for what I saw.’’ ‘‘I was scared to look.I was totally unprepared for how she looked.I said ‘She’ll never survive.’.’’
Parental impressions of the NICU Parents were asked to describe their earliest impressions and then specifically, impressions of the daily ward round. First impressions were sought, regardless of whether they had been spoken to antenatally, or had had the opportunity to visit. Most mothers could remember their first visit, but not necessarily which staff spoke to them, nor what was said. All of the dads interviewed could remember their first visit. . ‘‘Eventually, we got sorted and went down to see Baby. And it was like, ‘Oh, good God! Where did all these people come from?’ It was like a big shiny beacon. It was like, Wow! It’s all going on over here, you know. It’s like people you can talk to you know’’. .‘‘but as soon as I went in the door I recognised it (the unit) and it was like Oh! My God!. Here we go again. it’s going to happen again.’’ . ‘‘and then the first time we went in the room, it was dead shocking.’’ ‘‘I thought I was going to be petrified, seeing him and when I walked in, it was brilliant!’’ Some of those interviewed were overwhelmed by the sights and sounds of the neonatal unit and it took time for them to adjust to and become familiar with practices and routines. This unexpected outcome to the pregnancy had a tremendously incapacitating effect on parents’ abilities to function normally as described by Holmes (2004). ‘‘I think it was quite frightening seeing all the machinery (you) feel useless because you don’t know what to do All you can do is watch, really.’’ ‘‘Scary.Yeah. I panicked I think my heart stopped: I felt sick.’’ ‘‘I didn’t want to accept the fact that I might lose her, because I didn’t know what was going on.’’
Having now become part of the neonatal parent population, all parents were asked to give their impressions about the daily ward round and how helpful this had/ had not proved. It was evident that their impressions were very positive, and that both doctors and nurses provided them with information, although as Fowlie and McHaffie (2004) described, they found the translation from medical jargon to simple English a little difficult. ‘‘Every day, every single time we went in. They never kept us in the dark nothing hid from us at all.’’ ‘‘I just hid when the doctors were coming in. See all these words that I don’t understand just scared me.’’ ‘‘He (dad) used to come over for 9 o’clock in the morning and we’d go straight round and get on the ward round which was really good.’’ ‘‘They always said ‘Did you understand everything there?’ and then they’d summarise everything in layman’s terms.’’ ‘‘. it was very reassuring to go down and see about 10 Top doctors round your baby. You don’t often get 10 doctors round a patient, do you?’’ ‘‘The doctors got very technical very quickly and I felt a need to go back to the basics at times.’’ ‘‘.all the doctors were in there and were talking about (the baby) and I was in on my own. I felt really embarrassed, ‘cos, like they sat, just sat me on this stool, in the middle of everyone. Most parents tried to attend, especially during the early days of intensive care support: this was less obvious once they had progressed to lower dependency, and some felt there was little ‘new’ information to be gained. ‘‘.but then towards the end, after she’d (the baby) been in there a while, nothing new was happening.nobody could tell us any more.’’
202 ‘‘They really just said the same each time.’’ ‘‘At the end it was just ‘Continue’.’’ One father was particularly grateful for the unrestricted access to medical personnel. ‘‘When I got there at 4 (am) the consultant that was on.that night He stood with me for half an hour and explained everything I felt he was my own personal consultant.’’ Conversely, one set of parents, whose infant was cared for in three regional centres, expressed bewilderment at inconsistencies they observed during unit ward rounds. They were extremely happy to be involved in these, but failed to understand the logic of certain practices which sometimes appeared to contradict themselves. They commented that rigid adherence to policies one day, then flexibility in the same topic another day did not provide continuity.
Care delivery This particular theme ran through the entire parental journey. From the moment of antenatal admission, through delivery and first visits to the NICU, attendance at ward rounds, progression of the infant into low dependency care and preparation for discharge or transfer back to their base hospital, all healthcare staff were seen as care deliverers. Following delivery and neonatal admission, the parents’ overwhelming concern was to visit their baby and find out as much as possible about them. Separation, between mother and infant is distressing and this is thought to have both short and long term consequences (Adamson-Macedo, 2004). At the first visit, fathers would often wait to accompany mothers. Local unit practice has been to ask maternity staff to allow time for basic observations and infant stabilisation (e.g. intubation, insertion of intravenous lines, photographs of the baby) before bringing mother to visit. However, several parents commented that the time lag between delivery, and visiting the unit was very long. Without updates of information, this waiting period proved both stressful and distressing to parents, who were left wondering what was happening to their infant. ‘‘They wouldn’t let us in. It was the longest three hours of our life.’’ ‘‘They got taken away from me. That was, like, half 7 in the morning and I didn’t get to see them until 3 o’clock that afternoon. I was just past myself.’’
J. Gavey ‘‘They (Midwives) just kept saying ‘They’re not ready for you in the neonatal; not ready for you.’.’’ ‘‘. she went straight to the unit and I didn’t see her for 10 hours. ‘‘They wouldn’t let us on to the unit. I came to the unit and they sent us back.’’ ‘‘It took a couple of hours to get your picture (of the infant). It’s nice that the neonatal do pictures, but (the mother) asked and asked and asked.’’ The reason for this delay is unclear and several possibilities exist which may explain this: communication between delivery suite and neonates may be problematic: the parents’ recall may be imprecise; neonatal staff may be unaware of the time delay. The unit’s intensive care areas are very compact and there can be problems accommodating equipment and people, especially at the time of admission. Whatever the cause, it appears that nurses and midwives are acting as gatekeepers, (Fenwick et al., 2000) possibly without realising the impact of their actions upon anxious parents. Conversely, in the early days following admission, despite feedback from doctors and nurses, parents were sometimes at a loss in establishing their own roles within the technological environment of the NICU. ‘‘They tried to explain what they were doing and everything, erm, yeah. I mean it wasn’t really going in because I think I was in shock for a while.’’ ‘‘I felt like a part time mum at first.’’ ‘‘It got to a point where I felt like a visitor: just a visitor, ’cos that’s all I did.’’ ‘‘There was nothing we could do, but I think we knew that. So we just left it in the doctors’ hands, really.’’ On the neonatal unit, a paradox between intensive and low dependency care, emerged from the interview texts: Those parents whose infants had required lengthy intensive care support were uncomfortable when the move to lower dependency occurred. Some were unable to recognise that other infants had made the same transition. ‘‘When you are in intensive care, everybody is intensive aren’t they? . Then you move to special care and your baby has been to hell and back and . You’re next to a baby that, yes is a little bit poorly or isn’t quite big enough yet, but a lot of the babies in there haven’t actually had that journey.’’
Parental perceptions of neonatal care Other parents expressed relief that their infant no longer required intensive care support. ‘‘You don’t bond with them at all. I didn’t bond with her until she went into (high dependency) probably. Even though I did love her and wanted to do everything for her.’’ ‘‘Once he got off his breathing machine, he didn’t have any tubes in, I was a lot better. It was no problem. I didn’t have a problem touching him.’’ Some mothers felt that nurses were supervising them and that they had to be seen as ‘good mothers’ to maintain working relationships. (Lupton et al., 2001) Their comments suggest that their competencies as mothers were subject to assessment by other women; ‘‘I got ‘told off’ by one of them (the nurses) for doing his cares one way. I was upset (by this).’’ ‘‘We did get told off twice. (Dad) was holding her wrong. giving her a rub once. (and was told).‘No! You mustn’t do that’. And it was quite stern.’’ Inconsistencies in opinion and practices sometimes existed between Neonatal Nurses, making it more difficult for mothers, especially, to know what to do. ‘‘One nurse was lovely. ‘You must touch your baby.’.The next day another nurse (said). She’s got a temperature. Can you get your hand out (of the incubator)? Will you not touch her.’’ ‘‘. Sometimes I used to think I didn’t know what you wanted me to do.’’ These are regrettable recollections, since the importance of parental involvement in the days immediately following neonatal admission is recognised. (Coleman et al., 2003; Davis and Tesler Stein, 2005; Lee, 2004). Bialoskurski et al. (1999) describes how attachment between infants and parents is dependent on ‘physical contact and early interaction’. This reiterates the importance of early parental involvement, especially when intensive care support is required. The timing, of first physical touches and cuddles are important markers of this involvement. A very sick or unstable infant is likely to experience initial skin contact within its incubator space. Parents were therefore asked when they first touched or cuddled their infants. Most, but not all mothers had physically touched their infants within the first days of life. Of the 16 mothers interviewed, 2 had held their infant immediately after delivery. On the unit, 11 mothers had held their infant within the first week (2e7days), 2 mothers had their first
203 cuddle at 1e2 weeks, 2 mothers had to wait for 6 weeks for a cuddle and 1 mother waited 8 weeks before being offered her infant to cuddle. ‘‘I would say she must have been, .(pause). 6 weeks?’’ (For first cuddles). ‘‘We never held her ventilated’’. Having adjusted to life in the intensive care unit, with its potential for sudden and unexpected changes, subsequent improvement in the infant’s condition meant that infants now required low dependency care. Not only did this mean physically moving the infant into another room, but it also required parents to make the mental leap from intensive support to what appeared, outwardly, a more relaxed level of care delivery. Over half of those interviewed felt this to be one of the most startling and sometimes the most frightening incident of the whole of their experiences, as it often seemed to occur without prior notice. Some parents described this moment of discovery: ‘‘It was a real shock ’cos I’d gone into (ITU) and I just looked and I thought, My God! Where is she? We didn’t get any warning, did we?’’ ‘‘. And you get that heart stopping moment. And then you think,. No! They would have told us. She must be somewhere else’’ ‘‘I couldn’t see him and he wasn’t there! He’d been moved and then I saw him in his cot (down the hall).’’ With visibly less equipment and fewer nurses, this step down in intensity is meant to facilitate the principles of family centred care (Harrison, 1993; Smith et al., 2002); a concept familiar to the staff, but not necessarily parents (Redshaw, 1997). In the move towards discharge, these changes are normal as parents are encouraged to take back some of the responsibility of parenting whilst neonatal staff try to ‘de-intensify’ the infant’s care. (May, 1997) Unfortunately, the comfort, support, social acceptance and familiarity of established relationships formed with staff and parents in intensive care was gone. ‘‘We stayed close all the way through, until we got separated and she (Another mother and her baby) moved down (to special care). Then it was a bit harder ’cos we missed each other. You lose touch.’’ ‘‘.. in the neonatal unit; the nurses. They were like my mam or my friends.’’ (We went to see special care and thought) ‘‘It’s like Playschool in here.’’
204 For some, this step-down was as great a shock as had been the initial admission into intensive care. Some parents perceived a difference in the nursing staff’s skill mix and expertise despite the fact that all qualified nursing staff work with both intensive and special care infants. ‘‘I think at first, it’s hard to get used to. ’cos you’re so used to the intense, like one to one really aren’t you?’’ ‘‘We did think ‘Are they all competent?’’ ‘‘The staff didn’t seem to know as much about the baby’’. ‘‘So all of a sudden you seemed to have lost this cushion. You always had the nurse by your side.’’
Discussion This paper set out to investigate retrospective parental perceptions of neonatal care in a modern regional neonatal unit. For most parents, this was the first real opportunity they’d had to narrate their entire journey and for all, especially the mothers, it rekindled many emotions. A cathartic experience for some, several of them were tearful as they recalled the events they had faced. Many had experienced such a combination of traumatic events; antenatal illness, preterm labour, unplanned delivery, admission to the unit, separation from family, unfamiliar environment, post natal pain, lack of sleep and food and loss of regular routines, etc. that during the early days after admission, their ability to function ‘normally’ was challenged. Despite this, when asked, most remained willing to be interviewed. All were extremely grateful for the care their infants had received and were reluctant to express any concerns at the outset. When concerns were eventually broached, they were done so in an almost apologetic manner. They had, by their own admission been through a lot: ‘‘It’s a life-changing time, is this.You wouldn’t wish it on anybody.We’ve gone through a lot.but I think it’s made us stronger.’’ From the beginning of their NICU journey, parents needed honest information about their infant’s condition, progress and prognosis. The daily ward rounds were one method of gaining this information, although several of the couples, when asked, preferred to ask the nurse looking after the infant. (Brazy et al., 2001) Many wanted to be involved and actively participate in their infant’s care. At the same time, they had to learn
J. Gavey how to fit in, work with staff and make sense of all the information they were presented with, most of which was in a new language (Bowie, 2004). McGrath (2001) describes these two-way working relationships formed between staff and parents, as ‘guarded alliances’, whilst Bruns and McCollum (2002) explored partnerships between professionals, i.e. neonatologists or nurses and nonprofessionals (mothers), in the NICU. Initially, there appeared a requirement to temporarily suspend parental roles, responsibilities and some decision making skills. Whilst several parents were keen to participate in ward round discussions, some couples felt that by asking questions they were seen to be challenging the staff’s authority, rather than asking for clarification of hospital practices. Mothers, especially, were keen to befriend nursing staff and not to appear demanding as they wanted optimum care for their infant; a concept recognised in adult patients over 30 years ago (Stockwell, 1972). For some, especially those whose infants were born at low gestations, intensive care became a familiar place and transition to low dependency more difficult to accept. Perhaps the NICU provided the technology and staff expertise to give their babies a real chance. Movement away from intensive care, whilst indicating progress, was accompanied by renewed fears of survival. Several found the transition difficult and stressful. Many commented that movement between the two areas was particularly sudden, unexpected and disturbing and that relationships formed between themselves and other staff or parents were disrupted or lost at this time. Conversely, others with little understanding of what premature delivery meant were more fearful of intensive care. Although also shocked at any unexpected move to low dependency, their confidence grew quickly, allowing them to assume their roles as caregivers. The evidence clearly demonstrates that effective dialogue between parents, obstetric and neonatal staff is essential throughout. Parents vary in their capacity to adjust to neonatal intensive or low dependency care and improvement in the infant’s condition and need regular, positive reinforcement by staff during the early days of intensive care regardless of the infant’s gestation to prepare them for promotion within the unit.
Limitations of study This was a small qualitative study undertaken in one regional neonatal intensive care unit. As such, its generalisability is restricted although it reflects
Parental perceptions of neonatal care favourably with other authors. (Huber, 1998; Padden and Glen, 1997; Ward, 2001). The interviewer as a member of the nursing team had cared for some of the infants on the unit and was a recognised figure to all of the parents, making researcher bias an issue. It is arguable that neither parents nor interviewer could remain completely objective about the interview content. Certainly, within the text is evidence of reflexivity. Mary Carolan (2003) describes this as a characteristic of qualitative research. On the positive side, such a relationship can strengthen the quality of data received: The parents and researcher are both familiar with the infant’s history, the neonatal environment, and its language. They appeared relaxed and at ease during the interviews. It is important, however, to consider that a researcher from another speciality, whilst unfamiliar with the background details, might have received more open or less guarded comments. Although 31 parents had the potential to be present at interview mothers outnumbered fathers almost 2:1 (16 and 9 respectively) Sometimes, fathers’ absence was out of choice, but others were at work and could not attend. This biased the data towards a female perspective and included mothers’ experiences whilst inpatients on the maternity unit. In the future, if a similar methodology was utilised, more effort would be required to involve fathers.
205 offered. The creation of an information leaflet outlining the key differences between ITU/Special care could be helpful. This could include information about monitors, number of cots, staffing ratios, etc. It would provide a written explanation for parents and families to be read in their own time. Differences will always exist in the parental perceptions of neonatal care delivery. As technology advances, so do the challenges to maintain life at even lower gestations. If, however, our ‘rescues’ are at the cost of parental attachment and parenting skills, we do ourselves and the parents an injustice. Trust in and confidence between all parties is essential. The common goal is the recovery of the baby and return to the family unit. Real family centred care involves more than an invitation to ward rounds. This small study demonstrates that, given these accounts, our understanding of the parental journey is quite different from their experienced reality. Despite an outward demonstration of patience and even compliance, parents sometimes struggle to understand and keep pace with events. Parents have said they want to be active in the care of their infants and have demonstrated their ability to establish working relationships with neonatal staff to facilitate this. As health care professionals, responsible for both infants and their families, we must recognise how fragile parents are and consider how best we can support them along their journey.
Conclusion and recommendations The findings of this paper suggest that neonatal admission can be an alarming and distressing experience for parents. Most parents’ overriding concern was to gain access and information and they appreciated honest and frequent updates concerning their infant’s condition. Parents needed to understand that as their infant improved, less intensive care support was required. This natural reduction in medical and nursing interventions enabled re-establishment of their parental roles. Staff must explain how infants progress within the NICU, and prepare parents for changes, as ‘Discovering’ the event for themselves is frightening and can crush confidence levels. It is vital that neonatal staff positively reinforce the benefits to both baby and family which a move into special care will bring, so that fears are allayed. The geography of the unit may be such that parents have never seen low dependency and a walk down the corridor is recommended. For those babies returning to base hospitals, a visit to SCBU for parents, before transfer, should be
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www.intl.elsevierhealth.com/journals/jneo
Parental perceptions of neonatal care Jan Gavey* Neonatal Unit, James Cook University Hospital, Marton Road, Middlesbrough TS4 3BW, UK Available online 12 September 2007
KEYWORDS Parents; NICU admission; Family centred care; Care delivery
Abstract This qualitative study investigated retrospective experiences of parents whose infants (24e37 weeks’ gestation) required Neonatal Unit admission. Using semi-structured interviews, parents of 20 infants were recruited and 16 interviewed. Data analysis revealed several themes: Parental impressions, Care delivery; Impact on relationships and Parental control issues. Although parents generally found staff supportive and helpful, they highlighted difficulties they had experienced. Initial parental impressions and aspects of care delivery are presented here. Events preceding admission are often bewildering and unexpected. First impressions can be distressing and effective communication channels vital, if we are to allay parental fears. Recommendations include providing frequent updates for parents, Positive re-enforcement and support by staff as infants progress from intensive to special care and Provision of written information explaining the unique aspects of the neonatal environment. This small study provides insight into the experiences of a group of parents and valuable information for neonatal staff. ª 2007 Neonatal Nurses Association. Published by Elsevier Ltd. All rights reserved.
Introduction Historically, medical and nursing staff, increasingly supported by other specialities, have organised neonatal care, with parents as passive observers. As the responsibility of catering for infants of Lilliputian stature continues to challenge the profession, parental perceptions of their roles often remain unclear (O’Shea and Timmins, 2002; Raines, 1996), despite increasing beliefs in family centred and developmental care (Abdullah, 2004; Clayton,
* Tel.: þ44 1642 854871/2; fax: þ44 1642 854874. E-mail address: [email protected]
2000; Owens, 2001; Smith, 1999). With approximately 10% of deliveries requiring admission to the neonatal unit, (Euroking, 2006) not an insignificant number of parents experience the NICU environment each year and clinicians endeavour to make their NICU experience less frightening. (Lamy et al., 1997; Pearson and Andersen, 2001). Anecdotal evidence suggests complaints are fewer than in other health care specialities; a reflection, perhaps, of the family’s gratitude to the whole team for sending an infant home alive, if infant survival is the benchmark on which we are judged. With its increasing technology and participation in clinical trials, this alien environment is frightening to parents. (Saunders et al., 2003). Literature
1355-1841/$ - see front matter ª 2007 Neonatal Nurses Association. Published by Elsevier Ltd. All rights reserved. doi:10.1016/j.jnn.2007.06.001
200 has shown that parents feel a sense of loss, grief, uncertainty, role change and stress (Boxwell, 2000; Shields-Poe and Pinelli, 1997) and that mothers will ‘play the game’ (Fenwick et al., 2002) to ensure optimum care for their infants, following neonatal admission. Despite the scope of professional involvement and knowledge, parental participation and understanding is essential, otherwise the care delivery package is incomplete. Experienced neonatal nurses are aware of parental ‘highs’ as the infant’s condition improves and equally, their devastating ‘lows’ if uncertainty returns (Bloom, 2001). Health service provision, meanwhile, is increasingly under scrutiny from a consumer satisfaction perspective. Literature cites an increasing need for health care professionals to audit practices, measure customer satisfaction and investigate user involvement within the service. (Conner, 1999; Healthcare Commission, 2003; Department of Health, 2004; Thomas, 1999). The challenge is then, to seek ways in which we can demonstrate that we are doing a good job: That we have the ability to balance advances in medicine and nursing practices, whilst recognising parents as integral elements of the neonate’s care. Although literature exists citing parental experiences within NICUs, particularly the effect on mothers (Boyd, 2004; Doering et al., 2000; Holditch-Davis and Shandor Miles, 2000), this study aimed to explore parental experiences first hand, gain valuable insight and enable the multidisciplinary team to increase their understanding of parents’ needs and improve care delivery.
Methodology This qualitative research study was conducted to examine parental perceptions of neonatal care in one regional neonatal intensive care unit, using a semi-structured interview format. Once local hospital ethical approval was granted, over a 7 month period, parents whose infants were admitted to the NICU for more than 7 days and required a period of intensive care support, were eligible for consideration into the study. Infants who stayed less than 7 days, or had severe congenital abnormalities, were terminally ill or for adoption or fostering were not included. Such information would be equally valuable, but would require a more sensitive approach and more experienced researcher. Eligible parents were approached by the researcher pre hospital discharge/transfer and verbal consent sought. A combined parent’s information sheet and consent form was given, written consent subsequently obtained and
J. Gavey a provisional interview date set. A pilot interview was performed to test the interview format. A period some 4e6 weeks post discharge was suggested by former NICU parents as an optimum time for interview; memories were still fresh, yet some reflection/internalisation of the events would have occurred, as the researcher was keen to avoid memory decay (Hamilton, 2001). Parents were invited to describe their journey through the neonatal unit from admission to discharge. Regular contact was maintained where infants were transferred to local SCBUs, ensuring their discharge date was identified. All parents received a telephone call re-confirming their choice of interview date, place and time some 24e48 h pre-event. The study’s objective was to interview mothers and fathers, but on 4 occasions other relatives (3 grandmothers and 1 sibling) were present and contributed. A copy of the interview schedule was left with the parents. Each interview was tape recorded and transcribed verbatim, by the researcher. Field notes were written post interview. All personal details were anonymised to maintain patient confidentiality and the tapes kept in a locked drawer. In total a purposive sample of 20 sets of parents were recruited. Subsequently 4 sets did not go forward to interview: Three did not respond to attempts to contact them post discharge by telephone and letter, and one family had prolonged episodes of illness extending over several months. Sixteen interviews were therefore conducted: 10 in the parental home, 5 in a grandparent’s home and 1 in the hospital outpatient clinic. Of this sample group, 8 women were primigravida and 8 multiparous, 2 of whom had previously experienced early neonatal death (21 and 23 weeks respectively). The age range of the mothers was between 22e37 years. Of the 16 mothers who agreed to interview, 15 were supported by partners and one mother was unsupported at the time of delivery. All of the fathers were aware of the interviews and in total 9 were present. Amongst the infants were 1 set of twins and 15 singletons. Their gestational ages ranged from 24 to 37 weeks and birthweights between 600 3000 g. Their duration of stay on the neonatal unit ranged from 22 to 126 days and their reasons for admission were multifactoral. Fourteen of the infants were delivered in the local delivery suite (2 mothers having been transferred in from other localities). The remaining 2 mothers were delivered in their own hospital and their infants subsequently brought to the NICU by the neonatal retrieval team. An adaptation of Burnard, (1991) was used to identify and categorise emerging themes. A copy of the typed transcript was sent to each of the
Parental perceptions of neonatal care parents to validate the contents (Denscombe, 1998) and invite further comment. To date, none have been received. Several themes emerged from the data including preparation for delivery; parental impressions of the NICU; care delivery throughout maternal and neonatal hospitalisation; the impact the NICU had on relationships; and professional control vs. perceived lack of parental control. This article will consider parental impressions and care delivery within the sphere of early neonatal care.
201 ‘‘.to see them so helpless with all these wires in the incubator. it just breaks your heart.!’’ ‘‘She was like a shiny baby poussion . I had a tiny little chicken. She was just shiny and red and deformed with her arm and her talipes’’. ‘‘I think it’s quite sad really that you don’t have the elation of, you know, when you’ve had a baby and you see her for the first time.’’ ‘‘Nothing would prepare me for what I saw.’’ ‘‘I was scared to look.I was totally unprepared for how she looked.I said ‘She’ll never survive.’.’’
Parental impressions of the NICU Parents were asked to describe their earliest impressions and then specifically, impressions of the daily ward round. First impressions were sought, regardless of whether they had been spoken to antenatally, or had had the opportunity to visit. Most mothers could remember their first visit, but not necessarily which staff spoke to them, nor what was said. All of the dads interviewed could remember their first visit. . ‘‘Eventually, we got sorted and went down to see Baby. And it was like, ‘Oh, good God! Where did all these people come from?’ It was like a big shiny beacon. It was like, Wow! It’s all going on over here, you know. It’s like people you can talk to you know’’. .‘‘but as soon as I went in the door I recognised it (the unit) and it was like Oh! My God!. Here we go again. it’s going to happen again.’’ . ‘‘and then the first time we went in the room, it was dead shocking.’’ ‘‘I thought I was going to be petrified, seeing him and when I walked in, it was brilliant!’’ Some of those interviewed were overwhelmed by the sights and sounds of the neonatal unit and it took time for them to adjust to and become familiar with practices and routines. This unexpected outcome to the pregnancy had a tremendously incapacitating effect on parents’ abilities to function normally as described by Holmes (2004). ‘‘I think it was quite frightening seeing all the machinery (you) feel useless because you don’t know what to do All you can do is watch, really.’’ ‘‘Scary.Yeah. I panicked I think my heart stopped: I felt sick.’’ ‘‘I didn’t want to accept the fact that I might lose her, because I didn’t know what was going on.’’
Having now become part of the neonatal parent population, all parents were asked to give their impressions about the daily ward round and how helpful this had/ had not proved. It was evident that their impressions were very positive, and that both doctors and nurses provided them with information, although as Fowlie and McHaffie (2004) described, they found the translation from medical jargon to simple English a little difficult. ‘‘Every day, every single time we went in. They never kept us in the dark nothing hid from us at all.’’ ‘‘I just hid when the doctors were coming in. See all these words that I don’t understand just scared me.’’ ‘‘He (dad) used to come over for 9 o’clock in the morning and we’d go straight round and get on the ward round which was really good.’’ ‘‘They always said ‘Did you understand everything there?’ and then they’d summarise everything in layman’s terms.’’ ‘‘. it was very reassuring to go down and see about 10 Top doctors round your baby. You don’t often get 10 doctors round a patient, do you?’’ ‘‘The doctors got very technical very quickly and I felt a need to go back to the basics at times.’’ ‘‘.all the doctors were in there and were talking about (the baby) and I was in on my own. I felt really embarrassed, ‘cos, like they sat, just sat me on this stool, in the middle of everyone. Most parents tried to attend, especially during the early days of intensive care support: this was less obvious once they had progressed to lower dependency, and some felt there was little ‘new’ information to be gained. ‘‘.but then towards the end, after she’d (the baby) been in there a while, nothing new was happening.nobody could tell us any more.’’
202 ‘‘They really just said the same each time.’’ ‘‘At the end it was just ‘Continue’.’’ One father was particularly grateful for the unrestricted access to medical personnel. ‘‘When I got there at 4 (am) the consultant that was on.that night He stood with me for half an hour and explained everything I felt he was my own personal consultant.’’ Conversely, one set of parents, whose infant was cared for in three regional centres, expressed bewilderment at inconsistencies they observed during unit ward rounds. They were extremely happy to be involved in these, but failed to understand the logic of certain practices which sometimes appeared to contradict themselves. They commented that rigid adherence to policies one day, then flexibility in the same topic another day did not provide continuity.
Care delivery This particular theme ran through the entire parental journey. From the moment of antenatal admission, through delivery and first visits to the NICU, attendance at ward rounds, progression of the infant into low dependency care and preparation for discharge or transfer back to their base hospital, all healthcare staff were seen as care deliverers. Following delivery and neonatal admission, the parents’ overwhelming concern was to visit their baby and find out as much as possible about them. Separation, between mother and infant is distressing and this is thought to have both short and long term consequences (Adamson-Macedo, 2004). At the first visit, fathers would often wait to accompany mothers. Local unit practice has been to ask maternity staff to allow time for basic observations and infant stabilisation (e.g. intubation, insertion of intravenous lines, photographs of the baby) before bringing mother to visit. However, several parents commented that the time lag between delivery, and visiting the unit was very long. Without updates of information, this waiting period proved both stressful and distressing to parents, who were left wondering what was happening to their infant. ‘‘They wouldn’t let us in. It was the longest three hours of our life.’’ ‘‘They got taken away from me. That was, like, half 7 in the morning and I didn’t get to see them until 3 o’clock that afternoon. I was just past myself.’’
J. Gavey ‘‘They (Midwives) just kept saying ‘They’re not ready for you in the neonatal; not ready for you.’.’’ ‘‘. she went straight to the unit and I didn’t see her for 10 hours. ‘‘They wouldn’t let us on to the unit. I came to the unit and they sent us back.’’ ‘‘It took a couple of hours to get your picture (of the infant). It’s nice that the neonatal do pictures, but (the mother) asked and asked and asked.’’ The reason for this delay is unclear and several possibilities exist which may explain this: communication between delivery suite and neonates may be problematic: the parents’ recall may be imprecise; neonatal staff may be unaware of the time delay. The unit’s intensive care areas are very compact and there can be problems accommodating equipment and people, especially at the time of admission. Whatever the cause, it appears that nurses and midwives are acting as gatekeepers, (Fenwick et al., 2000) possibly without realising the impact of their actions upon anxious parents. Conversely, in the early days following admission, despite feedback from doctors and nurses, parents were sometimes at a loss in establishing their own roles within the technological environment of the NICU. ‘‘They tried to explain what they were doing and everything, erm, yeah. I mean it wasn’t really going in because I think I was in shock for a while.’’ ‘‘I felt like a part time mum at first.’’ ‘‘It got to a point where I felt like a visitor: just a visitor, ’cos that’s all I did.’’ ‘‘There was nothing we could do, but I think we knew that. So we just left it in the doctors’ hands, really.’’ On the neonatal unit, a paradox between intensive and low dependency care, emerged from the interview texts: Those parents whose infants had required lengthy intensive care support were uncomfortable when the move to lower dependency occurred. Some were unable to recognise that other infants had made the same transition. ‘‘When you are in intensive care, everybody is intensive aren’t they? . Then you move to special care and your baby has been to hell and back and . You’re next to a baby that, yes is a little bit poorly or isn’t quite big enough yet, but a lot of the babies in there haven’t actually had that journey.’’
Parental perceptions of neonatal care Other parents expressed relief that their infant no longer required intensive care support. ‘‘You don’t bond with them at all. I didn’t bond with her until she went into (high dependency) probably. Even though I did love her and wanted to do everything for her.’’ ‘‘Once he got off his breathing machine, he didn’t have any tubes in, I was a lot better. It was no problem. I didn’t have a problem touching him.’’ Some mothers felt that nurses were supervising them and that they had to be seen as ‘good mothers’ to maintain working relationships. (Lupton et al., 2001) Their comments suggest that their competencies as mothers were subject to assessment by other women; ‘‘I got ‘told off’ by one of them (the nurses) for doing his cares one way. I was upset (by this).’’ ‘‘We did get told off twice. (Dad) was holding her wrong. giving her a rub once. (and was told).‘No! You mustn’t do that’. And it was quite stern.’’ Inconsistencies in opinion and practices sometimes existed between Neonatal Nurses, making it more difficult for mothers, especially, to know what to do. ‘‘One nurse was lovely. ‘You must touch your baby.’.The next day another nurse (said). She’s got a temperature. Can you get your hand out (of the incubator)? Will you not touch her.’’ ‘‘. Sometimes I used to think I didn’t know what you wanted me to do.’’ These are regrettable recollections, since the importance of parental involvement in the days immediately following neonatal admission is recognised. (Coleman et al., 2003; Davis and Tesler Stein, 2005; Lee, 2004). Bialoskurski et al. (1999) describes how attachment between infants and parents is dependent on ‘physical contact and early interaction’. This reiterates the importance of early parental involvement, especially when intensive care support is required. The timing, of first physical touches and cuddles are important markers of this involvement. A very sick or unstable infant is likely to experience initial skin contact within its incubator space. Parents were therefore asked when they first touched or cuddled their infants. Most, but not all mothers had physically touched their infants within the first days of life. Of the 16 mothers interviewed, 2 had held their infant immediately after delivery. On the unit, 11 mothers had held their infant within the first week (2e7days), 2 mothers had their first
203 cuddle at 1e2 weeks, 2 mothers had to wait for 6 weeks for a cuddle and 1 mother waited 8 weeks before being offered her infant to cuddle. ‘‘I would say she must have been, .(pause). 6 weeks?’’ (For first cuddles). ‘‘We never held her ventilated’’. Having adjusted to life in the intensive care unit, with its potential for sudden and unexpected changes, subsequent improvement in the infant’s condition meant that infants now required low dependency care. Not only did this mean physically moving the infant into another room, but it also required parents to make the mental leap from intensive support to what appeared, outwardly, a more relaxed level of care delivery. Over half of those interviewed felt this to be one of the most startling and sometimes the most frightening incident of the whole of their experiences, as it often seemed to occur without prior notice. Some parents described this moment of discovery: ‘‘It was a real shock ’cos I’d gone into (ITU) and I just looked and I thought, My God! Where is she? We didn’t get any warning, did we?’’ ‘‘. And you get that heart stopping moment. And then you think,. No! They would have told us. She must be somewhere else’’ ‘‘I couldn’t see him and he wasn’t there! He’d been moved and then I saw him in his cot (down the hall).’’ With visibly less equipment and fewer nurses, this step down in intensity is meant to facilitate the principles of family centred care (Harrison, 1993; Smith et al., 2002); a concept familiar to the staff, but not necessarily parents (Redshaw, 1997). In the move towards discharge, these changes are normal as parents are encouraged to take back some of the responsibility of parenting whilst neonatal staff try to ‘de-intensify’ the infant’s care. (May, 1997) Unfortunately, the comfort, support, social acceptance and familiarity of established relationships formed with staff and parents in intensive care was gone. ‘‘We stayed close all the way through, until we got separated and she (Another mother and her baby) moved down (to special care). Then it was a bit harder ’cos we missed each other. You lose touch.’’ ‘‘.. in the neonatal unit; the nurses. They were like my mam or my friends.’’ (We went to see special care and thought) ‘‘It’s like Playschool in here.’’
204 For some, this step-down was as great a shock as had been the initial admission into intensive care. Some parents perceived a difference in the nursing staff’s skill mix and expertise despite the fact that all qualified nursing staff work with both intensive and special care infants. ‘‘I think at first, it’s hard to get used to. ’cos you’re so used to the intense, like one to one really aren’t you?’’ ‘‘We did think ‘Are they all competent?’’ ‘‘The staff didn’t seem to know as much about the baby’’. ‘‘So all of a sudden you seemed to have lost this cushion. You always had the nurse by your side.’’
Discussion This paper set out to investigate retrospective parental perceptions of neonatal care in a modern regional neonatal unit. For most parents, this was the first real opportunity they’d had to narrate their entire journey and for all, especially the mothers, it rekindled many emotions. A cathartic experience for some, several of them were tearful as they recalled the events they had faced. Many had experienced such a combination of traumatic events; antenatal illness, preterm labour, unplanned delivery, admission to the unit, separation from family, unfamiliar environment, post natal pain, lack of sleep and food and loss of regular routines, etc. that during the early days after admission, their ability to function ‘normally’ was challenged. Despite this, when asked, most remained willing to be interviewed. All were extremely grateful for the care their infants had received and were reluctant to express any concerns at the outset. When concerns were eventually broached, they were done so in an almost apologetic manner. They had, by their own admission been through a lot: ‘‘It’s a life-changing time, is this.You wouldn’t wish it on anybody.We’ve gone through a lot.but I think it’s made us stronger.’’ From the beginning of their NICU journey, parents needed honest information about their infant’s condition, progress and prognosis. The daily ward rounds were one method of gaining this information, although several of the couples, when asked, preferred to ask the nurse looking after the infant. (Brazy et al., 2001) Many wanted to be involved and actively participate in their infant’s care. At the same time, they had to learn
J. Gavey how to fit in, work with staff and make sense of all the information they were presented with, most of which was in a new language (Bowie, 2004). McGrath (2001) describes these two-way working relationships formed between staff and parents, as ‘guarded alliances’, whilst Bruns and McCollum (2002) explored partnerships between professionals, i.e. neonatologists or nurses and nonprofessionals (mothers), in the NICU. Initially, there appeared a requirement to temporarily suspend parental roles, responsibilities and some decision making skills. Whilst several parents were keen to participate in ward round discussions, some couples felt that by asking questions they were seen to be challenging the staff’s authority, rather than asking for clarification of hospital practices. Mothers, especially, were keen to befriend nursing staff and not to appear demanding as they wanted optimum care for their infant; a concept recognised in adult patients over 30 years ago (Stockwell, 1972). For some, especially those whose infants were born at low gestations, intensive care became a familiar place and transition to low dependency more difficult to accept. Perhaps the NICU provided the technology and staff expertise to give their babies a real chance. Movement away from intensive care, whilst indicating progress, was accompanied by renewed fears of survival. Several found the transition difficult and stressful. Many commented that movement between the two areas was particularly sudden, unexpected and disturbing and that relationships formed between themselves and other staff or parents were disrupted or lost at this time. Conversely, others with little understanding of what premature delivery meant were more fearful of intensive care. Although also shocked at any unexpected move to low dependency, their confidence grew quickly, allowing them to assume their roles as caregivers. The evidence clearly demonstrates that effective dialogue between parents, obstetric and neonatal staff is essential throughout. Parents vary in their capacity to adjust to neonatal intensive or low dependency care and improvement in the infant’s condition and need regular, positive reinforcement by staff during the early days of intensive care regardless of the infant’s gestation to prepare them for promotion within the unit.
Limitations of study This was a small qualitative study undertaken in one regional neonatal intensive care unit. As such, its generalisability is restricted although it reflects
Parental perceptions of neonatal care favourably with other authors. (Huber, 1998; Padden and Glen, 1997; Ward, 2001). The interviewer as a member of the nursing team had cared for some of the infants on the unit and was a recognised figure to all of the parents, making researcher bias an issue. It is arguable that neither parents nor interviewer could remain completely objective about the interview content. Certainly, within the text is evidence of reflexivity. Mary Carolan (2003) describes this as a characteristic of qualitative research. On the positive side, such a relationship can strengthen the quality of data received: The parents and researcher are both familiar with the infant’s history, the neonatal environment, and its language. They appeared relaxed and at ease during the interviews. It is important, however, to consider that a researcher from another speciality, whilst unfamiliar with the background details, might have received more open or less guarded comments. Although 31 parents had the potential to be present at interview mothers outnumbered fathers almost 2:1 (16 and 9 respectively) Sometimes, fathers’ absence was out of choice, but others were at work and could not attend. This biased the data towards a female perspective and included mothers’ experiences whilst inpatients on the maternity unit. In the future, if a similar methodology was utilised, more effort would be required to involve fathers.
205 offered. The creation of an information leaflet outlining the key differences between ITU/Special care could be helpful. This could include information about monitors, number of cots, staffing ratios, etc. It would provide a written explanation for parents and families to be read in their own time. Differences will always exist in the parental perceptions of neonatal care delivery. As technology advances, so do the challenges to maintain life at even lower gestations. If, however, our ‘rescues’ are at the cost of parental attachment and parenting skills, we do ourselves and the parents an injustice. Trust in and confidence between all parties is essential. The common goal is the recovery of the baby and return to the family unit. Real family centred care involves more than an invitation to ward rounds. This small study demonstrates that, given these accounts, our understanding of the parental journey is quite different from their experienced reality. Despite an outward demonstration of patience and even compliance, parents sometimes struggle to understand and keep pace with events. Parents have said they want to be active in the care of their infants and have demonstrated their ability to establish working relationships with neonatal staff to facilitate this. As health care professionals, responsible for both infants and their families, we must recognise how fragile parents are and consider how best we can support them along their journey.
Conclusion and recommendations The findings of this paper suggest that neonatal admission can be an alarming and distressing experience for parents. Most parents’ overriding concern was to gain access and information and they appreciated honest and frequent updates concerning their infant’s condition. Parents needed to understand that as their infant improved, less intensive care support was required. This natural reduction in medical and nursing interventions enabled re-establishment of their parental roles. Staff must explain how infants progress within the NICU, and prepare parents for changes, as ‘Discovering’ the event for themselves is frightening and can crush confidence levels. It is vital that neonatal staff positively reinforce the benefits to both baby and family which a move into special care will bring, so that fears are allayed. The geography of the unit may be such that parents have never seen low dependency and a walk down the corridor is recommended. For those babies returning to base hospitals, a visit to SCBU for parents, before transfer, should be
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