ORIGINAL ARTICLE
Balancing hope with reality: how neonatal nurses manage the uncertainty of caring for extremely premature babies Janet Green, Philip Darbyshire, Anne Adams and Debra Jackson
Aims and objectives. This article aims to explore the ways in which neonatal nurses manage the uncertainty associated with the treatment and outcomes of extremely premature babies. Background. Current literature suggests that survival rates of extremely premature babies have increased; however, the incidence of long-term problems has not decreased among survivors. The outcomes can often not be predicted; therefore, there is much uncertainty associated with survival and outcomes. Neonatal nurses care for babies and families during these times of uncertainty. This article will focus on how neonatal nurses manage and survive the challenges associated with uncertainty when caring for extremely premature babies. Design. Qualitative. Methods. This article used a series of interviews in a qualitative study informed by phenomenological insights. The analysis of the interview data involved the discovery of thematic statements and the analysis of the emerging themes. Results. Three themes captured the experience of working with uncertainty from the perspective of the neonatal nurses: ‘Everything is fine, then they crash’: When the honeymoon is over; ‘“I don’t know which one is going to be fine”: it’s like a lottery’ and ‘Balancing hope with reality’. Conclusion. Uncertainty had both positive and negative aspects, because while ever there was uncertainty, there was room for hope. While initial uncertainty of the baby’s prognosis and outcome gave the nurses hope, certainty of diagnosis and poor outcome could take that hope away. Relevance to clinical practice. Increasing survival of extremely premature babies will see neonatal nurses caring for more babies ≤24 weeks gestation. Prematurity has risks associated with life-sustaining treatments. Uncertainty is a reality of life for these babies, their families and the nursing and medical teams who care for them. It is important to recognise the challenges associated with uncertainty.
Authors: Janet Green, PhD, MBioethics, RN, Senior Lecturer, Faculty of Health, University of Technology, Sydney, Lindfield, NSW; Philip Darbyshire, PhD, RN, Professor of Nursing, Schools of Nursing & Midwifery, Monash University and Flinders University, Adelaide, SA and Director, Philip Darbyshire Consulting Ltd, Highbury, SA; Anne Adams PhD, RN, Retired; Debra Jackson, PhD, RN, Professor of Nursing, Oxford Brookes University, Oxford,
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What does this article contribute to the wider global clinical community?
• Hope and uncertainty are linked,
•
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and parents of extremely premature babies will endure prolonged and ongoing uncertainty. Neonatal nurses are the primary caregivers for the baby and the parents; therefore, they need to provide parents with hope promoting strategies without giving false hope. Parents have the right to be part of the decision making team about their extremely premature baby. Informed consent is a necessity; however, because of the complexities involved the uncertainty of early survival and later outcomes can be considered a significant stressor for both parents and nurses. Uncertainty is unavoidable in clinical practice, therefore neonatal nurses need to learn to recognise and acknowledge the discomfort associated with uncertainty, and find ways to manage it.
United Kingdom and University of New England, Armidale, Australia. Correspondence: Janet Green, Senior Lecturer, Faculty of Health, University of Technology, Sydney, PO Box 222, Lindfield, NSW 2070, Australia. Telephone: +61 2 95145740 E-mail: [email protected]
© 2015 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 2410–2418, doi: 10.1111/jocn.12800
Original article
Balancing hope with reality
Key words: extreme prematurity, infant care, neonatal nurses, qualitative approach, uncertainty Accepted for publication: 13 January 2015
Introduction Uncertainty regarding an illness has been identified as the greatest psychological stressor for patients with acute life threatening illness (Mishel 1997). Penrod (2001, p. 239) defines uncertainty as ‘. . .a dynamic state in which there is a perception of being unable to assign probabilities for outcomes that prompts a discomforting sensation that may be affected (reduced or escalated) through cognitive, emotive or behavioural reactions, or by the passage of time and changes in the perception of circumstances’. Indeed, the more dynamic the environment, the greater the potential for uncertainty, with higher levels of uncertainty existing with increasing complexity, changeability and unpredictability (Scott et al. 2008). In clinical practice, uncertainty usually occurs because of lack of available evidence, differences in how the evidence is interpreted and disagreement with the evidence (French 2006). Uncertainty is a central issue in the provision of neonatal intensive care for extremely premature babies (defined in this research as ≤24 weeks gestation). Babies born between 23–25 weeks gestation, and with a birth weight less than 500 grams are at the greatest risk for a poor outcome (Eichenwald & Stark 2008). The survival rates for babies of extreme prematurity have increased, the long-term morbidity continues to be high, with evidence that the incidence of neurodevelopmental disabilities and long-term disease states have not changed (Markestad et al. 2005), despite technology and a greater understanding of neonatal physiology. Things that contribute to a better outcome in extremely premature babies include exposure to antenatal corticosteroids, being female, singleton, higher birth weight, gestational age, prenatal transfer rather than neonatal transfer (Markestad et al. 2005), and surfactant replacement (Eichenwald & Stark 2008). The outcomes for extremely premature babies are not assured, and difficulties arise with decision making because the risks of immediate treatment need to be balanced against the uncertainty of the future. As Paris (2005, p. 1415) states ‘the best one can do. . ..is to make a human judgement based on probabilities’. Working in a context of uncertainty is common for nurses (Cranley et al. 2012). However, clinical uncertainty is a largely unarticulated aspect of nursing practice that
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remains under-theorised (Cranley et al. 2012). Uncertainty and ambiguity are acknowledged to be common in clinical nursing practice (Thompson & Dowding 2001; Stilos, Moura & Flint 2007; Vaismoradi et al. 2011), however there is not more current research on how nurses manage uncertainty and sustained uncertainty. Neonatal nurses work with uncertainty on a daily basis in the NICU. There is no research that addresses how neonatal nurses manage the uncertainty related to babies ≤24 weeks gestation. In this paper we examine uncertainty from the perspective of neonatal nursing.
Background One certainty in life is that there will always be uncertainty. Uncertainty is experienced in the present, and is affected by past experiences and individual coping mechanisms, which can in turn, impact on the future. Uncertainty implies discomfort. Characteristics of uncertainty include vagueness, ambiguity, inconsistency, unpredictability and unfamiliarity (McCormick 2002). Studies of uncertainty in patients and their families have revealed four major areas. These are: around symptoms, which can come and go; hospital routines which are unfamiliar; treatment decisions which produce variable outcomes; and communication with health professionals, with the messages frequently being unclear, ambiguous; or where information is not forthcoming (Wurzbach 1992). The birth of an extremely premature baby is a crisis situation; it is generally not planned; it is an emergency. When a woman enters premature labour at 24 weeks gestation the uncertainty begins - as Cohen (1993a, p. 84) stated ‘uncertainty comes to be experienced as intruding and receding in a wave-like pattern’. If the ≤24 weeks gestation baby is born and is resilient enough to be admitted to the NICU, one hurdle is completed, but many more are to follow. Certainty and uncertainty can be viewed as being at different ends of the spectrum, and may be inevitable during illness. For parents of the ≤24 weeks gestation baby, this uncertainty can present difficulties as they grapple with the realities of the present. Uncertainty adds to the stress and confusion they experience as they consider the present, the future and the past with the resultant threats to the health of the mother and baby.
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Uncertainty is not always a negative experience. It can have the effect of producing positive effects, as hope is linked to uncertainty. Absolute certainty of an outcome often means there is little room for hope. Certainty can lead to boredom, depression and a sense of helplessness, as the outcome is viewed as inevitable (Wurzbach 1992). Certainty and uncertainty can have the positive effect of mobilising coping resources. Uncertainty varies in magnitude and intensity, and can have the effect of making one question his/her everyday life, and existential questions such as life and death. Internal uncertainty can make people question the beliefs and values they base their lives on; it can also challenge or strengthen spiritual faith. Uncertainty can exist for a short period of time, or it can persist for an indefinite period of time. It can be experienced as a major stressor or a welcome challenge (Cohen 1993a).
Methods Aim Findings presented in this article are drawn from a larger mixed method doctoral thesis of the first author (Green 2008) with the research question that explored the ethical dilemmas and caregiving experiences of neonatal nurses caring for extremely premature babies 24 weeks gestation and less. This current paper aims to explore the ways in which neonatal nurses manage and survive the challenges associated with uncertainty when caring for extremely premature babies.
Design In the first stage of the study, Australian neonatal nurses who were members of a national neonatal nursing organisation were surveyed using a self-completed questionnaire. In the second stage of the study, following data analysis with SPSS, purposive sampling was used and data were collected through semi-structured interviews. The questionnaire asked specific questions, however, it also had room for participants to comment on their experience and issues of concern. While it would be important to obtain the thoughts, feelings and beliefs of parents and neonatologists about babies of extreme prematurity, the magnitude of the study made this impossible. In the second part a qualitative method informed by phenomenological insights and the work of Van Manen (1990) was used to guide this study. Phenomenology is concerned with the study of experience from the perspective of the individual, making the purpose of the phenomenological
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approach to illuminate the specific, to identify phenomena through how they are perceived by the actors in a situation, or the neonatal nurses in this research. Fundamental to Van Manen’s (1990) phenomenological approach is the belief that reflecting on the lived experience cannot occur while the person is still living it, therefore it is the retrospective reflection of the person who has lived through the experience that needs to be captured by the researcher.
Setting and participants In the first stage of the study the 760 neonatal nurses, members of a neonatal nursing organisation in Australia were invited to participate in a self-completed questionnaire. Four hundred and fourteen neonatal nurses returned a questionnaire, representing a response rate of 544%. Following data analysis with SPSS, the second stage involved purposive sampling to identify interview informants. The duration of the interview was between 60–90 minutes and was recorded using audio tape. The full interviews were transcribed prior to in-depth analysis to identify major themes. The criteria for participant selection were: Registered Nurse, currently employed in a neonatal intensive care unit or paediatric intensive care unit where neonates are cared for, or members of the newborn emergency retrieval team. They required greater than five years experience with caring for babies ≤24 weeks gestation. They needed to be willing to participate and agree to have their interview recorded. The nurses who were interviewed were between the ages of 34 and 52, and all had at least eight years’ experience with caring for extremely premature babies. The nurses had between 10–28 years’ experience in the neonatal intensive care. The nurses who were interviewed were recommended to the researcher by either Clinical Nurse Consultants (CNC) (12) or Clinical Nurse Educators (CNE) (12) from the perinatal or surgical centres.
Data collection In this study there were 14 interviews and 24 interview participants. There were eight single interviews and six focus groups. In each focus group there were between two to six neonatal nurses and the first author. The single or group interviews were conducted and the data collected by the first author. The interview questions were constructed from the issues that arose from the questionnaire, and time was also allowed for unstructured conversation. The interviews occurred in the participants’ own homes (5), the interviewer’s home (4), © 2015 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 2410–2418
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or a quiet room away from the neonatal unit at the participant’s hospital of employment (5).
Ethical Considerations A participant information sheet was provided to the questionnaire and interview participants. Verbal and written consent was obtained from the interview participants. All ethical processes were strictly adhered to by the first author. This research project was approved by the Flinders University (Approval Number 1924). Due to the sensitive nature of the topic and the possibility of revealing unethical practice, counselling was made available to participants if required, although none of the nurses required this service.
Data analysis The analysis was conducted by the first author and guided by Van Manen’s (1990) framework. All of the interviews were transcribed verbatim. The interview transcriptions were meticulously checked by the first three authors for their accuracy. The formal analysis consisted of line-by-line analysis, the construction of themes, and the interpretation of the nurses’ experience from the interview data in keeping with Van Manen (1990). The meaning units or themes were created and clustered together. Benner (1994) has emphasised that thematic analysis identifies meaningful patterns, stances and concerns, and can be more illuminative than looking at words or phrases. Creating themes is an active interpretative process. Themes help the researcher to focus on the significant issues in the data.
Rigour Rigour or trustworthiness is essential in a qualitative study. The data and emerging interpretations were regularly audited and validated by the entire research team. A decision trail was provided to the second and third researcher. Problems or misconceptions in the transcripts were corrected with a discussion between the interviewees and the researcher. Bracketing refers to restraint by the researcher when making judgements, and is the concerted attempt to put aside preconceived ideas, while not denying their existence (Hamill & Sinclair 2010). In this research, there were advantages of being an insider, a neonatal nurse with many years experience. Several nurses stated that they felt safe telling the researcher, because they knew that she would understand their stories, and the contexts in which they occurred. © 2015 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 2410–2418
Balancing hope with reality
Results Three themes captured the experience of dealing with uncertainty from the perspective of the neonatal nurses: (1) ‘Everything is fine, then they crash: when the honeymoon is over’, (2) ‘I don’t know which one is going to be fine: it’s like a lottery’ and (3) ‘Balancing hope with reality’. ‘Everything is fine, then they crash’: when the honeymoon is over, refers to the end of the period in which the extremely premature baby’s condition was considered to be stable. After the honeymoon phase the full nature of the seriousness of the baby’s condition emerges, and babies can succumb. The seeming unpredictability and randomness of the clinical course of the extremely premature baby is highlighted during ‘I don’t know which one is going to be fine’: it’s like a lottery’, while ‘Balancing hope with reality’ is about the neonatal nurses hoping for a good outcome for the extremely premature baby, but understanding that there might be a different reality. The themes are explored in more detail below.
‘Everything is fine, then they crash’: When the honeymoon is over The nurses all accepted they were non-committal about the survival of babies ≤24 weeks gestation until the ‘honeymoon’ (Nurses 5, 11, 12 & 13) phase has passed, or specifically they observed something to be optimistic about. As stated by one nurse, ‘You always have a honeymoon period with these babies. Always’ (Nurse 5). The honeymoon phase referred to the first two to three days after birth where the condition of the baby following resuscitation was stable. During the honeymoon phase, the babies often have an excellent clinical course, despite the threat of clinical deterioration. During the honeymoon phase, the nurses understood the parents’ hopes for survival of their baby would be high. However, the nurses had all witnessed babies rapidly deteriorate following the honeymoon period; therefore, they were reserved in their judgements about potential survival. One nurse explained the difficulty: It’s usually within the first two days. Everything looks good, you can ventilate quite easily, blood pressure is OK, head ultrasound is fine, everything is fine and then for some reason they crash [deteriorate]. It’s usually either an infection or something else goes wrong. (Nurse 12)
The nurses had all seen many tiny babies die in the first few days of life and lamented the difficulty of supporting parents, who were hopeful for the survival of their baby,
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when they themselves may not feel hopeful. The nurses tried to explain the significance of the honeymoon phase to the parents. One nurse explained: You know it’s going to happen. A 24 weeker, they’re not going to get through without anything happening. A 28 weeker may well, but not a 24 [weeker]. So you are on your guard. That’s why you say to the parent, “You know you have to take every minute as it comes”. You know that it’s not going to last, that honeymoon phase. (Nurse 11)
During the honeymoon phase the nurse were cautious in their communications with parents. The nurses reported that their previous experiences with uncertainty could change the way they gave parents information. One nurse spoke of how she explained the baby’s condition to the parents: Once upon a time I would have said to the parents, “You know your baby is doing really well, hardly this, hardly that. This has happened, that’s happening.” I don’t do that anymore. I say, “Yes it’s looking very good. But you know it’s early days yet.” (Nurse 8)
Clinicians are unable to accurately predict the outcome for tiny babies and parents and nurses are left in a kind of limbo waiting for positive or negative signs. High resolution ultrasound images can show the brain and any damage, yet some babies will always defy prediction. This factor contributes to the uncertainty:
gestation. One nurse likened the outcome, ‘. . .it’s like Russian roulette, isn’t it? Pick a number. It’s like a lottery’ (Nurse 19). The nurses believed the outcomes of extremely premature babies could be likened to a lottery. A lottery implies chance, the chance to win and gain a prize. The prize for the parents was a living, healthy baby. In the nurses’ comparison of the outcomes with a lottery is the idea of chance and uncertainty. The lottery involves the life of the extremely premature baby with the chance of an uncertain outcome and the hope of defying the odds. The uncertainty associated with chance was troubling for all the nurses. Prognosis prediction is not an accurate science. One nurse explained: We can’t turn around and say, “I’ve looked at this head ultrasound and I can guarantee you this is what is going to be wrong with your child at six years of age”. If we could do that, we wouldn’t have a problem. But we can’t. (Nurse 1)
All the nurses had cared for babies who had a stormy course and yet had survived with minimal apparent problems. They had also cared for babies who had a relatively smooth course, and who became significantly physically and cognitively impaired. Some babies’ outcomes defied explanation. There were babies that the nurses expected to have a poor outcome who were not as impaired as predicted. One nurse explained her uncertainty: I don’t know which one is going to be fine. One will come through
The uncertainty . . . was very unsettling for the nurses as they con-
and it’s really a disaster and the kid is fine. One will come through
tinually attempted to find anything, which might indicate a good
and have a really nice course, and it’s a disaster on the other end.
or bad outcome. (Nurse 14)
(Nurse 19)
The nurses spoke about how they managed the uncertainty by stating, ‘. . .you don’t think, ‘Well this is wonderful, everything is going to great.’ ‘You’re thinking about all the things that can go wrong’ (Nurse 13). One nurse concluded that any decision will carry some uncertainty, ‘. . .we know a certain amount of the picture, but we don’t know the full life picture’ (Nurse 17). During the honeymoon phase the nurses were on tenterhooks because they attempted to temper the parents’ hope with the reality that the baby might not survive. For many nurses the honeymoon phase was difficult to bear, and they distanced themselves emotionally until a clearer picture of the baby’s future emerged.
The nurses all passionately believed that seeing a good outcome could make the whole experience, ‘. . .really worthwhile, especially if you do see the baby go home, what you consider in fairly good shape, minimal handicaps’ (Nurse 11). When a baby survived with what the nurses considered a poor outcome they all questioned the decisions to treat. One nurse stated: We’ve all seen the end results that you start to feel a bit negative about it. Babies will come back later on and you’ll see what you’ve actually done. Some of them come back and they’re really good and you’ll think “Great!” and another one will come back with severe cerebral palsy, blind, and you think “Was this worth it?” (Nurse 11)
‘I don’t know which one is going to be fine’: It’s like a lottery
Balancing hope with reality
The nurses contemplated the random and often unpredictable medical course and outcomes of babies ≤24 weeks
Uncertainty seemed to be linked with hope, but at times the nurses were faced with a different reality. The nurses knew
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the outcomes for extremely premature babies. All nurses had seen at least one baby who had defied the odds and, ‘. . .has all these problems and is fine, for whatever reason is for all accounts, normal’ (Nurse 12). They were hopeful, as stated by one nurse, ‘. . .they’re hoping maybe this is the one child’ (Nurse 12). It was difficult for all the nurses to deal with the uncertainty of the outcomes. They recognised there were no guarantees when it came to extremely premature babies. One of the nurses stated, ‘. . .it’s a bit hard because we have had successes, but how many are we knocking off at the same time’ (Nurse 18). In using everyday language this nurse was showing concern about the iatrogenic effects of the very treatment designed to save the baby’s life. It was disappointing for the nurses when a baby they believed would have a positive outcome, went on to have a poor outcome. One nurse told of a 23-week baby who had an uncomplicated course. The baby had a few minor setbacks in the NICU, but otherwise had progressed very well. The staff anticipated this baby would be a success, however, when the baby was being discharged the staff were informed the baby had multiple problems. A negative outlook for the baby caused a grey mood to descend on to the NICU. The staff were devastated, one nurse explaining: We found all these disastrous things with her, just everything. Hearing and eyesight, head. Absolutely everything. It just put a pall over the place [NICU]. You know when everyone had heard these [outcomes]. . .No one could believe it. “Oh no!” ‘Here is one that we thought would do well.’ (Nurse 14)
Discussion Uncertainty and ambiguity are acknowledged to be common in clinical nursing practice (Vaismoradi et al. 2011), however, there is a need to better understand how nurses manage uncertainty and particularly, sustained uncertainty. As early as 1999, Kitson, recognised that health professionals needed to possess skills to recognise and manage clinical uncertainty. The focus of the current research is neonatal nurses who are required to manage their own uncertainty, however, they are also required to help the parents of extremely premature babies manage their uncertainty about their baby. Neonatal nurses are required to manage the uncertainty associated with caring for premature babies. McHaffie and Fowlie (1996) suggest that tolerance of the greyness of uncertainty is hard for some neonatal staff members. The nurses in this study likened the outcome of babies © 2015 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 2410–2418
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≤24 weeks gestation to a lottery. Tisdale (1986, p. 69) speaks about a lottery when she states, ‘. . .what a wonder, how we are given the children we receive. . .Here is another riddle, science. It is like a lottery – you stand in line for a ticket and the person in front of you gets the winning one’. Hale and Levy (1982) acknowledge that dealing with the uncertainty associated with caring for extremely premature babies could be stressful for neonatal nurses. Uncertainty has the potential to alter the parents’ and nurses’ moods. While nurses in the NICU may be more accustomed to uncertainty than parents, both are managing not just uncertainty, but ‘sustained uncertainty’ (Cohen 1993a, p. 77). Uncertainty about all aspects of the prognosis and outcome cause the nurses concern, and is confirmed in the results of this study. Uncertainty could prompt frustration in the nurses. Such frustration saw the use of everyday language. Everyday nurses’ language could be an example of ‘secret nurses’ business’ (Green 2008). This language is unlikely to be used outside the confines of nursing, because the public might lose confidence in the profession. The nurses spoke of what they call ‘disasters’ (Nurse 13, 14 & 19) when referring to outcomes for these tiny babies. A disaster can be defined as an occurrence causing widespread destruction and distress. A disaster implies devastation and three nurses described the outcomes for some babies in this way. Vaismoradi et al. (2011) also found that uncertainty could prompt feelings of frustration, anger, agitation and fear in nurses. The honeymoon phase as described by the nurses is not extensively documented in the literature. King (1992) noted that the honeymoon period was a time frame of several days during which an extremely premature infant had an excellent clinical course, before it deteriorated. The honeymoon period might be responsible unwarranted staff optimism (King 1992). The honeymoon period usually ends by the third day of life. Infection, respiratory deterioration or bleeding in the brain, are usually responsible for the deterioration (Muraskas & Parsi 2008). The nurses did not seem to be optimistic about the baby until they came to believe the baby would survive. Hope has been described as one’s future imagined reality (Turner & Stokes 2006). Hope is when the temptation to despair is overcome (Fitzgerald Miller 2007). During the honeymoon period the nurses used hope promoting strategies with parents. Hope is considered to be a dynamic inner power enabling transcendence of the current situation and fosters positive new ways of awarenesss and being (Turner & Stokes 2006). The nurses in this study recognised that parental hope is made possible through the development of a trusting relationship between the nurses and parents
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(Turner & Stokes 2006). However, they were all convinced that for hope to be believable it must be founded on reality. Giving the parents false hope was seen as unacceptable by all the participating nurses. Speaking from a parent’s perspective, Wilshire Warren (2000) and Bright (2000) spoke about the honeymoon period and the eventual deterioration in their respective baby’s conditions. Although they had been prepared, Bright (2000) believed the focus on the negative, although necessary, made their experience more distressing. Parents in a study by Kavanaugh et al. (2005, p. 355) stated they did not want ‘to hear false hope’. The concept of risk and uncertainty are closely correlated. The nurses in this study wondered how the parents would assess the risks of treatment for extremely premature babies, when they were themselves confused at times about the magnitude of risk. Risk refers to negative outcomes, or the probability or likelihood of an event occurring, combined with the magnitude of losses or gains that would ensue. The communication of risk in discussions between the medical staff and parents is the basis for informed consent and is crucial for decision-making. It is difficult to know how parents of extremely premature babies assess the risk of treatment or non-treatment. Although the parents were hopeful for a good outcome, the nurses in this study wanted the parents to understand the risks involved with treatment of their extremely premature baby. Yet, here is little evidence that knowledge of risk influences the way in which the public perceives and responds to risks (Alaszewski & Horlick-Jones 2003). The nurses hoped that the parents would be able to rationally review the available evidence to identify and choose the best course of action. This, however, is not possible when parents are possibly overwhelmed with stress at this time. The knowledge related to the risk of death and disability (minimal and severe) for the baby in the context of everyday life, is what the parents need to make decisions. This becomes problematic because individuals are more likely to be sensitive to, and over assess, the likelihood of low probability or high consequence risks (i.e. killed in train crash), and underestimate the risk of harm from more common causes (smoking) (Reyna et al. 2009). Parents of the extremely premature baby may over-assess the risk of severe disability, and under-assess the risk of long-term morbidities which can be permanent. The timing of risk is important. In the case of the extremely premature baby, the outcome may not be seen for months or even years. The nurses in this study understood that parents are required to balance present benefit with future risk, or decide to accept significant present risk for possible future benefit. Parents will rate adverse outcomes differently, and what one person sees
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as catastrophic could be seen by another as acceptable quality of life. Parents of premature babies have been found to be in a state of uncertainty about their baby and its future (Watson 2010).When communicating with families, medical staff often use exemplars, or examples of exemplary children who defied the odds, despite contradictory brain ultrasound images. To give a complete picture, the babies who did worse than expected should also be presented, because the babies who survive the odds are rarities. The nurses in this study vividly remembered the children who did poorly, and as Vermeulen (2004) suggests these babies are used as a deterring reference, or a metaphor in times of doubt about the wisdom of saving other babies. Uncertainty is about looking back on previous babies, but also involves the future prediction of quality and quantity of life. All the nurses in this study told stories about the positive, the negative and when uncertainty prevailed. Babies that defy explanation could be an example of what Cohen (1993a, p. 80) sees as ‘. . .an experience that challenges our assumptive world’. The assumptive world for the neonatal nurses is their clinical knowledge, values, beliefs and expectations (Cohen 1993a) about extremely premature babies. Neonatal nurses need to consider whether they are inadvertently conspiring with the medical staff to maintain the parents in a place of uncertainty. If nurses temper the parents’ hope with reality, as they believe they do, then uncertainty may not be an onerous place for the parents. It might make caring for the extremely premature baby and its parents easier for the nurses. For the parents to be positive that their child will survive, particularly during the early honeymoon phase when nothing is certain, is difficult for the nurses. Allowing for uncertainty in the parents helps the nurses prepare the parents for all eventualities. While there might be hope with uncertainty, uncertainty can be a difficult place for parents. During times of uncertainty when their baby is sick, parents shift worlds and ‘. . .move from the secure world of the known, the familiar, and the unpredictable to a norm less world of the ambiguous boundaries, unclear rules, probabilistic predictions, and sinister probabilities’ (Cohen 1993a, p. 83). Helping parents take one day at a time is an approach nurses can offer. This slow progression is important because, for the parents, ‘. . .thinking about the future seems to invite the threat of loss’ (Cohen 1993a, p. 83).
Conclusion Uncertainty prevails in the NICU and was a constant companion of these nurses. This uncertainty seemed to © 2015 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 2410–2418
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affect the nurses. The uncertainty in the NICU is summed up by Morris (1999, p. 23) who states that, ‘. . .in this unpredictable job, where the common saying is ‘one day at a time’. I am always aware that I have neither all the answers nor the control, and a greater presence is holding the strings’. Neonatal nurses need to develop strategies that help them manage the uncertainty surrounding the prognosis and outcomes of extremely premature babies. Event-familiarity exists for the nurses, which represented the degree to which the situation was repetitive or had recognisable cues (Mishel & Braden 1988). When events are familiar, less uncertainty exists, however, event-familiarity develops over time. The nurses believed they could predict which babies would live or die in the short term, therefore, the uncertainty is related to the outcome of the baby who survived. Hope is associated with uncertainty. It was difficult for the nurses to hold on to hope when their experiences have led them to a different conclusion. Developing a philosophy that includes giving the best possible care to extremely premature babies, but recognising that uncertainty exists might be helpful for neonatal nurses.
Relevance to clinical practice Increasing survival of extremely premature babies will see neonatal nurses caring for more babies ≤24 weeks gestation. Prematurity has risks associated with life-sustaining treatments. Uncertainty is a reality of life for these babies, their families and the nursing and medical teams who care for them. It is important to recognise the challenges associated with uncertainty.
Disclosure The authors have confirmed that all authors meet the ICMJE criteria for authorship credit (www.icmje.org/ ethical_1author.html), as follows: (1) substantial contributions to conception and design of, or acquisition of data or analysis and interpretation of data, (2) drafting the article or revising it critically for important intellectual content, and (3) final approval of the version to be published.
Conflict of Interest There was no conflict of interest associated with this study.
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King NM (1992) Transparency in neonatal intensive care. Hastings Center Report 22, 18–25. Kitson A (1999) Foreward. In EvidenceBased Practice: A Primer for Health Care Professionals (Dawes M, Davies P, Gray A, Mant J, Seers K & Snowball R eds.) Churchill Livingstone, Edinburgh, UK, pp. 3. Markestad T, Kaaresen PI, Rønnestad A, Reigstad H, Lossius K, Medbø S, Zanussi G, Engelund IE, Polit C, Skjaerven R & Irgens LM (2005) Early death, morbidity, and need of treatment among extremely premature infants. Pediatrics 115, 1289–1298. McCormick KM (2002) A concept analysis of uncertainty in illness. Journal of Nursing Scholarship 34, 127–131. McHaffie HE & Fowlie PW (1996) Life, Death and Decisions: Doctors and Nurses Reflect on Neonatal Practice. Hochland & Hochland Ltd, Cheshire, UK. Mishel MH (1997) Uncertainty in acute illness. Annual Review of Nursing Research 15, 57–80.
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utilization behaviors. Qualitative Health Research 18, 347–357. Stilos K, Moura SL & Flint F (2007) Building comfort with ambiguity in nursing practice. Clinical Journal of Oncology Nursing 11, 259–263. Thompson C & Dowding D (2001) Responding to uncertainty in nursing practice. International Journal of Nursing Studies 38, 609–615. Tisdale S (1986) The Sorcerer’s Apprentice: Medical Miracles and Other Disasters. Henry Holt & Sons, New York, NY. Turner DS & Stokes L (2006) Hope promoting strategies of Registered Nurses. Journal of Advanced Nursing 56, 363–372. Vaismoradi M, Salsali M & Ahmadi F (2011) Nurses’ experiences of uncertainty in clinical practice: a descriptive study. Journal of Advanced Nursing 67, 991–999.
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Balancing hope with reality: how neonatal nurses manage the uncertainty of caring for extremely premature babies Janet Green, Philip Darbyshire, Anne Adams and Debra Jackson
Aims and objectives. This article aims to explore the ways in which neonatal nurses manage the uncertainty associated with the treatment and outcomes of extremely premature babies. Background. Current literature suggests that survival rates of extremely premature babies have increased; however, the incidence of long-term problems has not decreased among survivors. The outcomes can often not be predicted; therefore, there is much uncertainty associated with survival and outcomes. Neonatal nurses care for babies and families during these times of uncertainty. This article will focus on how neonatal nurses manage and survive the challenges associated with uncertainty when caring for extremely premature babies. Design. Qualitative. Methods. This article used a series of interviews in a qualitative study informed by phenomenological insights. The analysis of the interview data involved the discovery of thematic statements and the analysis of the emerging themes. Results. Three themes captured the experience of working with uncertainty from the perspective of the neonatal nurses: ‘Everything is fine, then they crash’: When the honeymoon is over; ‘“I don’t know which one is going to be fine”: it’s like a lottery’ and ‘Balancing hope with reality’. Conclusion. Uncertainty had both positive and negative aspects, because while ever there was uncertainty, there was room for hope. While initial uncertainty of the baby’s prognosis and outcome gave the nurses hope, certainty of diagnosis and poor outcome could take that hope away. Relevance to clinical practice. Increasing survival of extremely premature babies will see neonatal nurses caring for more babies ≤24 weeks gestation. Prematurity has risks associated with life-sustaining treatments. Uncertainty is a reality of life for these babies, their families and the nursing and medical teams who care for them. It is important to recognise the challenges associated with uncertainty.
Authors: Janet Green, PhD, MBioethics, RN, Senior Lecturer, Faculty of Health, University of Technology, Sydney, Lindfield, NSW; Philip Darbyshire, PhD, RN, Professor of Nursing, Schools of Nursing & Midwifery, Monash University and Flinders University, Adelaide, SA and Director, Philip Darbyshire Consulting Ltd, Highbury, SA; Anne Adams PhD, RN, Retired; Debra Jackson, PhD, RN, Professor of Nursing, Oxford Brookes University, Oxford,
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What does this article contribute to the wider global clinical community?
• Hope and uncertainty are linked,
•
•
and parents of extremely premature babies will endure prolonged and ongoing uncertainty. Neonatal nurses are the primary caregivers for the baby and the parents; therefore, they need to provide parents with hope promoting strategies without giving false hope. Parents have the right to be part of the decision making team about their extremely premature baby. Informed consent is a necessity; however, because of the complexities involved the uncertainty of early survival and later outcomes can be considered a significant stressor for both parents and nurses. Uncertainty is unavoidable in clinical practice, therefore neonatal nurses need to learn to recognise and acknowledge the discomfort associated with uncertainty, and find ways to manage it.
United Kingdom and University of New England, Armidale, Australia. Correspondence: Janet Green, Senior Lecturer, Faculty of Health, University of Technology, Sydney, PO Box 222, Lindfield, NSW 2070, Australia. Telephone: +61 2 95145740 E-mail: [email protected]
© 2015 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 2410–2418, doi: 10.1111/jocn.12800
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Balancing hope with reality
Key words: extreme prematurity, infant care, neonatal nurses, qualitative approach, uncertainty Accepted for publication: 13 January 2015
Introduction Uncertainty regarding an illness has been identified as the greatest psychological stressor for patients with acute life threatening illness (Mishel 1997). Penrod (2001, p. 239) defines uncertainty as ‘. . .a dynamic state in which there is a perception of being unable to assign probabilities for outcomes that prompts a discomforting sensation that may be affected (reduced or escalated) through cognitive, emotive or behavioural reactions, or by the passage of time and changes in the perception of circumstances’. Indeed, the more dynamic the environment, the greater the potential for uncertainty, with higher levels of uncertainty existing with increasing complexity, changeability and unpredictability (Scott et al. 2008). In clinical practice, uncertainty usually occurs because of lack of available evidence, differences in how the evidence is interpreted and disagreement with the evidence (French 2006). Uncertainty is a central issue in the provision of neonatal intensive care for extremely premature babies (defined in this research as ≤24 weeks gestation). Babies born between 23–25 weeks gestation, and with a birth weight less than 500 grams are at the greatest risk for a poor outcome (Eichenwald & Stark 2008). The survival rates for babies of extreme prematurity have increased, the long-term morbidity continues to be high, with evidence that the incidence of neurodevelopmental disabilities and long-term disease states have not changed (Markestad et al. 2005), despite technology and a greater understanding of neonatal physiology. Things that contribute to a better outcome in extremely premature babies include exposure to antenatal corticosteroids, being female, singleton, higher birth weight, gestational age, prenatal transfer rather than neonatal transfer (Markestad et al. 2005), and surfactant replacement (Eichenwald & Stark 2008). The outcomes for extremely premature babies are not assured, and difficulties arise with decision making because the risks of immediate treatment need to be balanced against the uncertainty of the future. As Paris (2005, p. 1415) states ‘the best one can do. . ..is to make a human judgement based on probabilities’. Working in a context of uncertainty is common for nurses (Cranley et al. 2012). However, clinical uncertainty is a largely unarticulated aspect of nursing practice that
© 2015 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 2410–2418
remains under-theorised (Cranley et al. 2012). Uncertainty and ambiguity are acknowledged to be common in clinical nursing practice (Thompson & Dowding 2001; Stilos, Moura & Flint 2007; Vaismoradi et al. 2011), however there is not more current research on how nurses manage uncertainty and sustained uncertainty. Neonatal nurses work with uncertainty on a daily basis in the NICU. There is no research that addresses how neonatal nurses manage the uncertainty related to babies ≤24 weeks gestation. In this paper we examine uncertainty from the perspective of neonatal nursing.
Background One certainty in life is that there will always be uncertainty. Uncertainty is experienced in the present, and is affected by past experiences and individual coping mechanisms, which can in turn, impact on the future. Uncertainty implies discomfort. Characteristics of uncertainty include vagueness, ambiguity, inconsistency, unpredictability and unfamiliarity (McCormick 2002). Studies of uncertainty in patients and their families have revealed four major areas. These are: around symptoms, which can come and go; hospital routines which are unfamiliar; treatment decisions which produce variable outcomes; and communication with health professionals, with the messages frequently being unclear, ambiguous; or where information is not forthcoming (Wurzbach 1992). The birth of an extremely premature baby is a crisis situation; it is generally not planned; it is an emergency. When a woman enters premature labour at 24 weeks gestation the uncertainty begins - as Cohen (1993a, p. 84) stated ‘uncertainty comes to be experienced as intruding and receding in a wave-like pattern’. If the ≤24 weeks gestation baby is born and is resilient enough to be admitted to the NICU, one hurdle is completed, but many more are to follow. Certainty and uncertainty can be viewed as being at different ends of the spectrum, and may be inevitable during illness. For parents of the ≤24 weeks gestation baby, this uncertainty can present difficulties as they grapple with the realities of the present. Uncertainty adds to the stress and confusion they experience as they consider the present, the future and the past with the resultant threats to the health of the mother and baby.
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Uncertainty is not always a negative experience. It can have the effect of producing positive effects, as hope is linked to uncertainty. Absolute certainty of an outcome often means there is little room for hope. Certainty can lead to boredom, depression and a sense of helplessness, as the outcome is viewed as inevitable (Wurzbach 1992). Certainty and uncertainty can have the positive effect of mobilising coping resources. Uncertainty varies in magnitude and intensity, and can have the effect of making one question his/her everyday life, and existential questions such as life and death. Internal uncertainty can make people question the beliefs and values they base their lives on; it can also challenge or strengthen spiritual faith. Uncertainty can exist for a short period of time, or it can persist for an indefinite period of time. It can be experienced as a major stressor or a welcome challenge (Cohen 1993a).
Methods Aim Findings presented in this article are drawn from a larger mixed method doctoral thesis of the first author (Green 2008) with the research question that explored the ethical dilemmas and caregiving experiences of neonatal nurses caring for extremely premature babies 24 weeks gestation and less. This current paper aims to explore the ways in which neonatal nurses manage and survive the challenges associated with uncertainty when caring for extremely premature babies.
Design In the first stage of the study, Australian neonatal nurses who were members of a national neonatal nursing organisation were surveyed using a self-completed questionnaire. In the second stage of the study, following data analysis with SPSS, purposive sampling was used and data were collected through semi-structured interviews. The questionnaire asked specific questions, however, it also had room for participants to comment on their experience and issues of concern. While it would be important to obtain the thoughts, feelings and beliefs of parents and neonatologists about babies of extreme prematurity, the magnitude of the study made this impossible. In the second part a qualitative method informed by phenomenological insights and the work of Van Manen (1990) was used to guide this study. Phenomenology is concerned with the study of experience from the perspective of the individual, making the purpose of the phenomenological
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approach to illuminate the specific, to identify phenomena through how they are perceived by the actors in a situation, or the neonatal nurses in this research. Fundamental to Van Manen’s (1990) phenomenological approach is the belief that reflecting on the lived experience cannot occur while the person is still living it, therefore it is the retrospective reflection of the person who has lived through the experience that needs to be captured by the researcher.
Setting and participants In the first stage of the study the 760 neonatal nurses, members of a neonatal nursing organisation in Australia were invited to participate in a self-completed questionnaire. Four hundred and fourteen neonatal nurses returned a questionnaire, representing a response rate of 544%. Following data analysis with SPSS, the second stage involved purposive sampling to identify interview informants. The duration of the interview was between 60–90 minutes and was recorded using audio tape. The full interviews were transcribed prior to in-depth analysis to identify major themes. The criteria for participant selection were: Registered Nurse, currently employed in a neonatal intensive care unit or paediatric intensive care unit where neonates are cared for, or members of the newborn emergency retrieval team. They required greater than five years experience with caring for babies ≤24 weeks gestation. They needed to be willing to participate and agree to have their interview recorded. The nurses who were interviewed were between the ages of 34 and 52, and all had at least eight years’ experience with caring for extremely premature babies. The nurses had between 10–28 years’ experience in the neonatal intensive care. The nurses who were interviewed were recommended to the researcher by either Clinical Nurse Consultants (CNC) (12) or Clinical Nurse Educators (CNE) (12) from the perinatal or surgical centres.
Data collection In this study there were 14 interviews and 24 interview participants. There were eight single interviews and six focus groups. In each focus group there were between two to six neonatal nurses and the first author. The single or group interviews were conducted and the data collected by the first author. The interview questions were constructed from the issues that arose from the questionnaire, and time was also allowed for unstructured conversation. The interviews occurred in the participants’ own homes (5), the interviewer’s home (4), © 2015 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 2410–2418
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or a quiet room away from the neonatal unit at the participant’s hospital of employment (5).
Ethical Considerations A participant information sheet was provided to the questionnaire and interview participants. Verbal and written consent was obtained from the interview participants. All ethical processes were strictly adhered to by the first author. This research project was approved by the Flinders University (Approval Number 1924). Due to the sensitive nature of the topic and the possibility of revealing unethical practice, counselling was made available to participants if required, although none of the nurses required this service.
Data analysis The analysis was conducted by the first author and guided by Van Manen’s (1990) framework. All of the interviews were transcribed verbatim. The interview transcriptions were meticulously checked by the first three authors for their accuracy. The formal analysis consisted of line-by-line analysis, the construction of themes, and the interpretation of the nurses’ experience from the interview data in keeping with Van Manen (1990). The meaning units or themes were created and clustered together. Benner (1994) has emphasised that thematic analysis identifies meaningful patterns, stances and concerns, and can be more illuminative than looking at words or phrases. Creating themes is an active interpretative process. Themes help the researcher to focus on the significant issues in the data.
Rigour Rigour or trustworthiness is essential in a qualitative study. The data and emerging interpretations were regularly audited and validated by the entire research team. A decision trail was provided to the second and third researcher. Problems or misconceptions in the transcripts were corrected with a discussion between the interviewees and the researcher. Bracketing refers to restraint by the researcher when making judgements, and is the concerted attempt to put aside preconceived ideas, while not denying their existence (Hamill & Sinclair 2010). In this research, there were advantages of being an insider, a neonatal nurse with many years experience. Several nurses stated that they felt safe telling the researcher, because they knew that she would understand their stories, and the contexts in which they occurred. © 2015 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 2410–2418
Balancing hope with reality
Results Three themes captured the experience of dealing with uncertainty from the perspective of the neonatal nurses: (1) ‘Everything is fine, then they crash: when the honeymoon is over’, (2) ‘I don’t know which one is going to be fine: it’s like a lottery’ and (3) ‘Balancing hope with reality’. ‘Everything is fine, then they crash’: when the honeymoon is over, refers to the end of the period in which the extremely premature baby’s condition was considered to be stable. After the honeymoon phase the full nature of the seriousness of the baby’s condition emerges, and babies can succumb. The seeming unpredictability and randomness of the clinical course of the extremely premature baby is highlighted during ‘I don’t know which one is going to be fine’: it’s like a lottery’, while ‘Balancing hope with reality’ is about the neonatal nurses hoping for a good outcome for the extremely premature baby, but understanding that there might be a different reality. The themes are explored in more detail below.
‘Everything is fine, then they crash’: When the honeymoon is over The nurses all accepted they were non-committal about the survival of babies ≤24 weeks gestation until the ‘honeymoon’ (Nurses 5, 11, 12 & 13) phase has passed, or specifically they observed something to be optimistic about. As stated by one nurse, ‘You always have a honeymoon period with these babies. Always’ (Nurse 5). The honeymoon phase referred to the first two to three days after birth where the condition of the baby following resuscitation was stable. During the honeymoon phase, the babies often have an excellent clinical course, despite the threat of clinical deterioration. During the honeymoon phase, the nurses understood the parents’ hopes for survival of their baby would be high. However, the nurses had all witnessed babies rapidly deteriorate following the honeymoon period; therefore, they were reserved in their judgements about potential survival. One nurse explained the difficulty: It’s usually within the first two days. Everything looks good, you can ventilate quite easily, blood pressure is OK, head ultrasound is fine, everything is fine and then for some reason they crash [deteriorate]. It’s usually either an infection or something else goes wrong. (Nurse 12)
The nurses had all seen many tiny babies die in the first few days of life and lamented the difficulty of supporting parents, who were hopeful for the survival of their baby,
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when they themselves may not feel hopeful. The nurses tried to explain the significance of the honeymoon phase to the parents. One nurse explained: You know it’s going to happen. A 24 weeker, they’re not going to get through without anything happening. A 28 weeker may well, but not a 24 [weeker]. So you are on your guard. That’s why you say to the parent, “You know you have to take every minute as it comes”. You know that it’s not going to last, that honeymoon phase. (Nurse 11)
During the honeymoon phase the nurse were cautious in their communications with parents. The nurses reported that their previous experiences with uncertainty could change the way they gave parents information. One nurse spoke of how she explained the baby’s condition to the parents: Once upon a time I would have said to the parents, “You know your baby is doing really well, hardly this, hardly that. This has happened, that’s happening.” I don’t do that anymore. I say, “Yes it’s looking very good. But you know it’s early days yet.” (Nurse 8)
Clinicians are unable to accurately predict the outcome for tiny babies and parents and nurses are left in a kind of limbo waiting for positive or negative signs. High resolution ultrasound images can show the brain and any damage, yet some babies will always defy prediction. This factor contributes to the uncertainty:
gestation. One nurse likened the outcome, ‘. . .it’s like Russian roulette, isn’t it? Pick a number. It’s like a lottery’ (Nurse 19). The nurses believed the outcomes of extremely premature babies could be likened to a lottery. A lottery implies chance, the chance to win and gain a prize. The prize for the parents was a living, healthy baby. In the nurses’ comparison of the outcomes with a lottery is the idea of chance and uncertainty. The lottery involves the life of the extremely premature baby with the chance of an uncertain outcome and the hope of defying the odds. The uncertainty associated with chance was troubling for all the nurses. Prognosis prediction is not an accurate science. One nurse explained: We can’t turn around and say, “I’ve looked at this head ultrasound and I can guarantee you this is what is going to be wrong with your child at six years of age”. If we could do that, we wouldn’t have a problem. But we can’t. (Nurse 1)
All the nurses had cared for babies who had a stormy course and yet had survived with minimal apparent problems. They had also cared for babies who had a relatively smooth course, and who became significantly physically and cognitively impaired. Some babies’ outcomes defied explanation. There were babies that the nurses expected to have a poor outcome who were not as impaired as predicted. One nurse explained her uncertainty: I don’t know which one is going to be fine. One will come through
The uncertainty . . . was very unsettling for the nurses as they con-
and it’s really a disaster and the kid is fine. One will come through
tinually attempted to find anything, which might indicate a good
and have a really nice course, and it’s a disaster on the other end.
or bad outcome. (Nurse 14)
(Nurse 19)
The nurses spoke about how they managed the uncertainty by stating, ‘. . .you don’t think, ‘Well this is wonderful, everything is going to great.’ ‘You’re thinking about all the things that can go wrong’ (Nurse 13). One nurse concluded that any decision will carry some uncertainty, ‘. . .we know a certain amount of the picture, but we don’t know the full life picture’ (Nurse 17). During the honeymoon phase the nurses were on tenterhooks because they attempted to temper the parents’ hope with the reality that the baby might not survive. For many nurses the honeymoon phase was difficult to bear, and they distanced themselves emotionally until a clearer picture of the baby’s future emerged.
The nurses all passionately believed that seeing a good outcome could make the whole experience, ‘. . .really worthwhile, especially if you do see the baby go home, what you consider in fairly good shape, minimal handicaps’ (Nurse 11). When a baby survived with what the nurses considered a poor outcome they all questioned the decisions to treat. One nurse stated: We’ve all seen the end results that you start to feel a bit negative about it. Babies will come back later on and you’ll see what you’ve actually done. Some of them come back and they’re really good and you’ll think “Great!” and another one will come back with severe cerebral palsy, blind, and you think “Was this worth it?” (Nurse 11)
‘I don’t know which one is going to be fine’: It’s like a lottery
Balancing hope with reality
The nurses contemplated the random and often unpredictable medical course and outcomes of babies ≤24 weeks
Uncertainty seemed to be linked with hope, but at times the nurses were faced with a different reality. The nurses knew
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the outcomes for extremely premature babies. All nurses had seen at least one baby who had defied the odds and, ‘. . .has all these problems and is fine, for whatever reason is for all accounts, normal’ (Nurse 12). They were hopeful, as stated by one nurse, ‘. . .they’re hoping maybe this is the one child’ (Nurse 12). It was difficult for all the nurses to deal with the uncertainty of the outcomes. They recognised there were no guarantees when it came to extremely premature babies. One of the nurses stated, ‘. . .it’s a bit hard because we have had successes, but how many are we knocking off at the same time’ (Nurse 18). In using everyday language this nurse was showing concern about the iatrogenic effects of the very treatment designed to save the baby’s life. It was disappointing for the nurses when a baby they believed would have a positive outcome, went on to have a poor outcome. One nurse told of a 23-week baby who had an uncomplicated course. The baby had a few minor setbacks in the NICU, but otherwise had progressed very well. The staff anticipated this baby would be a success, however, when the baby was being discharged the staff were informed the baby had multiple problems. A negative outlook for the baby caused a grey mood to descend on to the NICU. The staff were devastated, one nurse explaining: We found all these disastrous things with her, just everything. Hearing and eyesight, head. Absolutely everything. It just put a pall over the place [NICU]. You know when everyone had heard these [outcomes]. . .No one could believe it. “Oh no!” ‘Here is one that we thought would do well.’ (Nurse 14)
Discussion Uncertainty and ambiguity are acknowledged to be common in clinical nursing practice (Vaismoradi et al. 2011), however, there is a need to better understand how nurses manage uncertainty and particularly, sustained uncertainty. As early as 1999, Kitson, recognised that health professionals needed to possess skills to recognise and manage clinical uncertainty. The focus of the current research is neonatal nurses who are required to manage their own uncertainty, however, they are also required to help the parents of extremely premature babies manage their uncertainty about their baby. Neonatal nurses are required to manage the uncertainty associated with caring for premature babies. McHaffie and Fowlie (1996) suggest that tolerance of the greyness of uncertainty is hard for some neonatal staff members. The nurses in this study likened the outcome of babies © 2015 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 2410–2418
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≤24 weeks gestation to a lottery. Tisdale (1986, p. 69) speaks about a lottery when she states, ‘. . .what a wonder, how we are given the children we receive. . .Here is another riddle, science. It is like a lottery – you stand in line for a ticket and the person in front of you gets the winning one’. Hale and Levy (1982) acknowledge that dealing with the uncertainty associated with caring for extremely premature babies could be stressful for neonatal nurses. Uncertainty has the potential to alter the parents’ and nurses’ moods. While nurses in the NICU may be more accustomed to uncertainty than parents, both are managing not just uncertainty, but ‘sustained uncertainty’ (Cohen 1993a, p. 77). Uncertainty about all aspects of the prognosis and outcome cause the nurses concern, and is confirmed in the results of this study. Uncertainty could prompt frustration in the nurses. Such frustration saw the use of everyday language. Everyday nurses’ language could be an example of ‘secret nurses’ business’ (Green 2008). This language is unlikely to be used outside the confines of nursing, because the public might lose confidence in the profession. The nurses spoke of what they call ‘disasters’ (Nurse 13, 14 & 19) when referring to outcomes for these tiny babies. A disaster can be defined as an occurrence causing widespread destruction and distress. A disaster implies devastation and three nurses described the outcomes for some babies in this way. Vaismoradi et al. (2011) also found that uncertainty could prompt feelings of frustration, anger, agitation and fear in nurses. The honeymoon phase as described by the nurses is not extensively documented in the literature. King (1992) noted that the honeymoon period was a time frame of several days during which an extremely premature infant had an excellent clinical course, before it deteriorated. The honeymoon period might be responsible unwarranted staff optimism (King 1992). The honeymoon period usually ends by the third day of life. Infection, respiratory deterioration or bleeding in the brain, are usually responsible for the deterioration (Muraskas & Parsi 2008). The nurses did not seem to be optimistic about the baby until they came to believe the baby would survive. Hope has been described as one’s future imagined reality (Turner & Stokes 2006). Hope is when the temptation to despair is overcome (Fitzgerald Miller 2007). During the honeymoon period the nurses used hope promoting strategies with parents. Hope is considered to be a dynamic inner power enabling transcendence of the current situation and fosters positive new ways of awarenesss and being (Turner & Stokes 2006). The nurses in this study recognised that parental hope is made possible through the development of a trusting relationship between the nurses and parents
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(Turner & Stokes 2006). However, they were all convinced that for hope to be believable it must be founded on reality. Giving the parents false hope was seen as unacceptable by all the participating nurses. Speaking from a parent’s perspective, Wilshire Warren (2000) and Bright (2000) spoke about the honeymoon period and the eventual deterioration in their respective baby’s conditions. Although they had been prepared, Bright (2000) believed the focus on the negative, although necessary, made their experience more distressing. Parents in a study by Kavanaugh et al. (2005, p. 355) stated they did not want ‘to hear false hope’. The concept of risk and uncertainty are closely correlated. The nurses in this study wondered how the parents would assess the risks of treatment for extremely premature babies, when they were themselves confused at times about the magnitude of risk. Risk refers to negative outcomes, or the probability or likelihood of an event occurring, combined with the magnitude of losses or gains that would ensue. The communication of risk in discussions between the medical staff and parents is the basis for informed consent and is crucial for decision-making. It is difficult to know how parents of extremely premature babies assess the risk of treatment or non-treatment. Although the parents were hopeful for a good outcome, the nurses in this study wanted the parents to understand the risks involved with treatment of their extremely premature baby. Yet, here is little evidence that knowledge of risk influences the way in which the public perceives and responds to risks (Alaszewski & Horlick-Jones 2003). The nurses hoped that the parents would be able to rationally review the available evidence to identify and choose the best course of action. This, however, is not possible when parents are possibly overwhelmed with stress at this time. The knowledge related to the risk of death and disability (minimal and severe) for the baby in the context of everyday life, is what the parents need to make decisions. This becomes problematic because individuals are more likely to be sensitive to, and over assess, the likelihood of low probability or high consequence risks (i.e. killed in train crash), and underestimate the risk of harm from more common causes (smoking) (Reyna et al. 2009). Parents of the extremely premature baby may over-assess the risk of severe disability, and under-assess the risk of long-term morbidities which can be permanent. The timing of risk is important. In the case of the extremely premature baby, the outcome may not be seen for months or even years. The nurses in this study understood that parents are required to balance present benefit with future risk, or decide to accept significant present risk for possible future benefit. Parents will rate adverse outcomes differently, and what one person sees
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as catastrophic could be seen by another as acceptable quality of life. Parents of premature babies have been found to be in a state of uncertainty about their baby and its future (Watson 2010).When communicating with families, medical staff often use exemplars, or examples of exemplary children who defied the odds, despite contradictory brain ultrasound images. To give a complete picture, the babies who did worse than expected should also be presented, because the babies who survive the odds are rarities. The nurses in this study vividly remembered the children who did poorly, and as Vermeulen (2004) suggests these babies are used as a deterring reference, or a metaphor in times of doubt about the wisdom of saving other babies. Uncertainty is about looking back on previous babies, but also involves the future prediction of quality and quantity of life. All the nurses in this study told stories about the positive, the negative and when uncertainty prevailed. Babies that defy explanation could be an example of what Cohen (1993a, p. 80) sees as ‘. . .an experience that challenges our assumptive world’. The assumptive world for the neonatal nurses is their clinical knowledge, values, beliefs and expectations (Cohen 1993a) about extremely premature babies. Neonatal nurses need to consider whether they are inadvertently conspiring with the medical staff to maintain the parents in a place of uncertainty. If nurses temper the parents’ hope with reality, as they believe they do, then uncertainty may not be an onerous place for the parents. It might make caring for the extremely premature baby and its parents easier for the nurses. For the parents to be positive that their child will survive, particularly during the early honeymoon phase when nothing is certain, is difficult for the nurses. Allowing for uncertainty in the parents helps the nurses prepare the parents for all eventualities. While there might be hope with uncertainty, uncertainty can be a difficult place for parents. During times of uncertainty when their baby is sick, parents shift worlds and ‘. . .move from the secure world of the known, the familiar, and the unpredictable to a norm less world of the ambiguous boundaries, unclear rules, probabilistic predictions, and sinister probabilities’ (Cohen 1993a, p. 83). Helping parents take one day at a time is an approach nurses can offer. This slow progression is important because, for the parents, ‘. . .thinking about the future seems to invite the threat of loss’ (Cohen 1993a, p. 83).
Conclusion Uncertainty prevails in the NICU and was a constant companion of these nurses. This uncertainty seemed to © 2015 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 2410–2418
Original article
Balancing hope with reality
affect the nurses. The uncertainty in the NICU is summed up by Morris (1999, p. 23) who states that, ‘. . .in this unpredictable job, where the common saying is ‘one day at a time’. I am always aware that I have neither all the answers nor the control, and a greater presence is holding the strings’. Neonatal nurses need to develop strategies that help them manage the uncertainty surrounding the prognosis and outcomes of extremely premature babies. Event-familiarity exists for the nurses, which represented the degree to which the situation was repetitive or had recognisable cues (Mishel & Braden 1988). When events are familiar, less uncertainty exists, however, event-familiarity develops over time. The nurses believed they could predict which babies would live or die in the short term, therefore, the uncertainty is related to the outcome of the baby who survived. Hope is associated with uncertainty. It was difficult for the nurses to hold on to hope when their experiences have led them to a different conclusion. Developing a philosophy that includes giving the best possible care to extremely premature babies, but recognising that uncertainty exists might be helpful for neonatal nurses.
Relevance to clinical practice Increasing survival of extremely premature babies will see neonatal nurses caring for more babies ≤24 weeks gestation. Prematurity has risks associated with life-sustaining treatments. Uncertainty is a reality of life for these babies, their families and the nursing and medical teams who care for them. It is important to recognise the challenges associated with uncertainty.
Disclosure The authors have confirmed that all authors meet the ICMJE criteria for authorship credit (www.icmje.org/ ethical_1author.html), as follows: (1) substantial contributions to conception and design of, or acquisition of data or analysis and interpretation of data, (2) drafting the article or revising it critically for important intellectual content, and (3) final approval of the version to be published.
Conflict of Interest There was no conflict of interest associated with this study.
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