ORIGINAL ARTICLE
Looking like a proper baby: nurses’ experiences of caring for extremely premature infants Janet Green, Philip Darbyshire, Anne Adams and Debra Jackson
Aims and objectives. To explore the ways in which neonatal nurses draw meaning and deal with the challenges associated with caring for extremely premature babies. Background. Current literature suggests that nurses face challenges providing care to certain patients because of their appearance. This article will focus on those difficulties in relation to neonatal nurses caring for infants ≤24 weeks of gestation in the neonatal intensive care unit. Extremely premature babies often have more the appearance of a foetus than the appearance of a baby, and this presented challenges for the neonatal nurses. Design. This paper has used interviews and drew insights from interpretative phenomenology. Methods. This paper used a series of interviews in a qualitative study informed by phenomenology. The analysis of the interview data involved the discovery of thematic statements and the analysis of the emerging themes. Results. This paper outlines the difficulties experienced by neonatal nurses when caring for a baby that resembles a foetus more than it does a full-term infant. The theme the challenges of caregiving was captured by three subthemes: A foetus or a viable baby?; protective strategies and attributing personality. Conclusion. This study identified that neonatal nurses experience a range of difficulties when providing care for an infant who resembled a foetus rather than a full-term baby. They employed strategies that minimised the foetal appearance and maximised the appearance and attributes associated with a newborn baby. Relevance to clinical practice. Increasing survival of extremely premature infants will see nurses caring for more babies ≤24 weeks of gestation. Caring for extremely premature babies has been reported as being stressful. It is important to understand the nature of stress facing this highly specialised neonatal nursing workforce. Supportive work environments could help to ameliorate stress, facilitate better care of tiny babies and decrease staff turnover.
What does this paper contribute to the wider global clinical community?
• The number of extremely prema-
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ture babies in the neonatal nursery is increasing, and neonatal nurses are the primary caregivers to the baby and family. Neonatal nurses experience challenges when caring for babies who resemble a foetus rather than a term infant. Neonatal nurses need to acknowledge the difficulties they face when caring for extremely premature babies in order to help the parents bond with their baby.
Key words: extreme prematurity, infant care, interview, neonatal nurses, qualitative research Accepted for publication: 18 March 2014
Authors: Janet Green, PhD, RN, MBioethics, Senior Lecturer, Faculty of Health, University of Technology, Sydney, NSW; Philip Darbyshire, PhD, RN, Professor of Nursing, Schools of Nursing & Midwifery, Monash University and Flinders University and Director, Philip Darbyshire Consulting Ltd, Adelaide, SA; Anne Adams, PhD, RN, retired, Debra Jackson, PhD, RN,
© 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 81–89, doi: 10.1111/jocn.12608
Professor, Faculty of Health, University of Technology, Sydney, NSW, Australia Correspondence: Janet Green, Senior Lecturer, Faculty of Health, University of Technology, PO Box 222, Lindfield, Sydney, NSW 2070, Australia. Telephone: +61 2 95145740. E-mail: [email protected]
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Introduction A foetus and baby are different, and as such, a distinction can be made between the two entities. The foetus has biological life, whereas the baby has personal human life (Engelhardt 1973). The ontological and moral status of the foetus changes with foetal viability. The concept of foetus is more challenging than its mere definition. In Australia, the states differ as to when a foetus is deemed viable, and this ranges from 14–22 weeks of gestation (Cica, 1998– 1999). At this stage, the foetus would be unlikely to survive outside the maternal womb, even with neonatal intensive care. Viability is used to decide when there is an obligation to the foetus. Biology does not equate with social values, and obligation is a social, not a biological category, while viability is purely a biological entity (Engelhardt 1973). With technology that can visualise the foetus in utero, it almost becomes common property. Isaacson (1996) suggested that because of the ability to visualise the foetus, the unborn can be termed ‘foetus-infant’. This is where the foetus in utero and the baby ex utero are blurred as a single entity. The visualisation of the activity of the foetus emphasises the character of the unborn, while ignoring its morphological immaturity. Visualisation of the foetus ensures its personification, where the foetus is seen as a separate human being with its own identity, personality and character. The foetus in ‘2001 A Space Odyssey’ (Clarke & Kubrick 1993, Clarke 2004) has been portrayed as free floating and larger than life (Casper 1998) and seems to have taken on a life of its own. Prospective parents may not conceptualise their unborn child as a foetus. Ultrasound now plays an important role in the construction of the relationship between the pregnant woman, her partner, the foetus and the social world (Williams et al. 2001). Inferences of personhood are now derived from ultrasound technology, as the inhabitant of the womb can be seen kicking, growing (Williams et al. 2001) and engaging in endearing infant-like behaviours such as thumb sucking. In a study by Williams et al. (2001), prospective parents thought of their foetuses as babies, even as early as 12 weeks of gestation. The prospective parents believed the foetus looked like a baby on the ultrasound scan. A newspaper article by Marsh (2003) showed ultrasound scans where the facial features of the foetus could be seen. While they are still biologically foetal, it is easy to recognise them as human – as future healthy full-term babies. The status of the foetus is therefore socially, culturally and politically constructed, and its status will depend on who is attributing the meaning.
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Caring for certain types of patients can be very challenging and distressing for nurses (Schlomann 1999), such as burns patients, as elucidated by Nagy (1999). Extremely premature babies have an appearance that is obviously human (Williams et al. 2001), but that appearance challenges notions associated with the expectations of what a newborn infant should look like, feel like and behave like. Neonatal nurses need to reconcile these notions of image, tactile and behavioural disparity and draw meaning from their experiences if they are to provide quality care for such tiny human beings.
Background The foetus and infant differ in morphology, development and maturity. The extremely premature infant can be described as being suspended between ‘womb and air’ (Whittier 1999). Its head is too big for its body, a peculiarity that will correct itself with time (Tisdale 1986). The extremely premature baby has transparent skin because it lacks fat deposits. It is covered in fine hair called lanugo, and this hair could be described as fur-like. This furry-red foetus-infant acts differently from its full-term counterpart who resembles a baby, and acts like an acceptable newborn. Whittier (1999) suggested the extremely premature infant speaks a different body language in many ways, which is unlike that of its full-term counterpart. The embryo is called a foetus at the ninth week from the time of conception up to the moment of birth, when it is referred to as a baby or infant. In the case of the extremely premature baby, the baby is born during the foetal period where the organs are present, but not yet fully functional and are still undergoing further development (Moore & Persaud 2003). Thus, the baby born ≤24 weeks of gestation is in no way the finished product. The normal length of pregnancy is considered to be after the 37th completed week and before the end of the 42nd completed week. The early weeks of gestation are devoted to growth, while the final weeks are devoted to maturity and finishing off the finer details. Babies born ≤24 weeks of gestation are closer to viability than term. Very early in gestation the basic form has started. There are fingers, toes, facial features all encased in a thin covering of skin (Henig & Fletcher 1983). At ≤24 weeks of gestation, the baby is physically frail. The eyes are fused, the skin is gelatinous, and anything that touches the baby will stick to it. The heart can be seen to be visibly beating through the chest wall as their ribs are thin. Arteries and veins can be seen (Henig & Fletcher 1983).
© 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 81–89
Original article
When the extremely premature infant is born, it resembles a foetus rather than a baby. The foetus-infant is reliant on technology for even its most rudimentary functions. This is very distressing for parents, who have been expecting to deliver a full-term baby – one who is cute and able to be cuddled and nursed. Henig and Fletcher (1983, p. 4) stated, ‘. . .the majority of preemie parents are frightened, grieved, and sometimes can be repulsed by the first sight of their stunningly tiny babies. It is important to recognise and accept these feelings – and to remember that a very small preemie is still, by rights, a foetus’. Neonatal nurses are the primary caregivers to babies in the neonatal intensive care unit (NICU) and have cited caring for infants 5 years of experience with caring for babies ≤ 24 weeks of gestation. They needed to be English speaking, willing to participate and have the interview audio-taped.
that valuable time is taken away from other children while we watch a fetus die.
Data collection
The work of Raines (1993) and Townshend (1990) generated important insights into some of the challenges associated with nursing extremely premature babies – babies who in previous generations would simply have not survived their birth. However, the field of neonatology has advanced significantly in the almost three decades that have elapsed since their seminal works, and therefore, it would seem timely to re-examine this issue of challenges faced by nurses caring for extremely premature infants.
The data were collected by the first author, an experienced neonatal nurse. The individual and group interviews were conducted with a purposive sample of neonatal nurses. The questions asked during the semi-structured interviews were based on findings from a questionnaire and explored the nurses’ experiences of caring for infants of ≤24 weeks of gestation.
Aim Findings presented in this paper are drawn from a larger mixed methods doctoral thesis (Green 2007). The focus of this paper is the qualitative data that explores the experiences of neonatal nurses caring for extremely premature babies. © 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 81–89
Ethical considerations A participant information sheet was provided to the questionnaire and interview participants. Verbal and written consent was obtained from the interview participants with the option of asking questions for clarification. Confidentiality for all participants was assured. The names of the interview participants were not included on the transcripts, and the data were secured in a locked drawer. This research project was approved by the relevant institutional research
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ethics committee. Due to the sensitive nature of the topic, counselling was made available to participants if required, although none of the nurses required this service.
Data analysis A qualitative method informed by phenomenological insights was used to interpret the interviews because of the need to understand the nurses’ experiences of caregiving dilemmas surrounding extremely premature babies. Phenomenology, the study of lived experience, asks the question ‘what is this or that kind of experience like’ (Van Manen 1990, p. 9). Reflecting on the lived experience cannot occur while the person is still living it; therefore, in phenomenology, it is retrospective reflection on an experience that the person has already lived through that is of interest to the researcher. According to Van Manen (nd), phenomenological research should be seen as a dynamic interplay between four procedural activities. These include turning to a phenomenon of interest and investigating it. The experience should be investigated as it is lived rather than how it is conceptualised. The essential themes should be reflected upon, and the description of the phenomenon should be provided through writing. The identification and interpretation of the nurses’ accounts of their experience was achieved through thematic analysis and reflective processes. Meaning units or themes were created and clustered together. Thematic analysis identifies meaningful patterns, stances and concerns and is more important than looking at words or phrases (Benner 1994). According to Braun and Clarke (2006, p.12), themes need to provide an accurate understanding of the ‘big picture’. The text from the interviews was examined in a careful and systematic way. 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). Creating themes is an active interpretative process. Themes help the researcher to focus on the significant issues in the data. It is through the act of reading and writing that insights emerge (Van Manen 2006). Significant ideas from the text were converted to a written thematic statement. The nurses’ stories held accounts of their experience of caring for extremely premature babies. These accounts were structured to form the whole or a full description of the phenomenon.
Rigour Koch and Harrington (1998) spoke of the preoccupation of qualitative researchers with methodological rigour, which is
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seen as a legacy of the positivist epistemology. Rigour is part of the validity of the qualitative study; however, rigour deals specifically with how a research paradigm’s ontology and epistemology inform the interpretative methodology which is used to answer the question (Koch 1996). Data were collected by the first researcher, herself an experienced neonatal nurse. To ensure integrity of data, data and emerging interpretations were regularly audited and validated by the coauthors. A decision trail was provided to establish the rigour and trustworthiness of the study.
Results This paper outlines the difficulties experienced by neonatal nurses when caring for a baby that resembles a foetus more than it does a full-term infant. The theme of the challenge of caregiving was captured by three subthemes: A foetus or a viable baby?; protective strategies and attributing personality. While the nurses understood that they were caring for a human being, the differences in appearance between the extremely premature infant and a full-term baby led them to reflect on whether they were caring for a foetus or a viable baby. Protective strategies was about the nurses providing physical care to a human being that resembled a foetus, but protecting themselves from becoming attached to the infant before the infant declared itself worthy of their optimism. Attributing personality emphasised infant behaviour and interaction. When the nurses could see something such as feisty behaviour or an individual personality in the baby, they became more optimistic in caring for the infant. The themes are explored in more detail below.
A foetus or viable baby? When caring for extremely premature babies, there were times when the nurses questioned whether they were caring for foetuses or babies. The nurses all spoke about the experience of providing care to babies who resembled foetuses more than babies. It seemed important to the participant nurses that the infant should possess at least some of the recognisable physical characteristics of what the nurses perceived to be a baby. One nurse stated, . . . people are shocked when they first see a baby that size, because they don’t look like a baby (nurse 16). Like participant 16, other nurses also disclosed feeling shocked by the baby’s appearance: We’ve been told they’re 23 or 24 [weeks] and then they come around [to the NICU] looking like a little golf ball head with absolutely no features and very foetal (nurse 14). These tiny infants were considered very vulnerable and fragile human babies by the nurses, yet the appearance of © 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 81–89
Original article
the extremely immature baby was sometimes at odds with that view. One nurse explained how different they looked: We call them foetuses because they have such a foetally [sic] appearance. A larger baby, they look like a baby should look. You very rarely see a 23/24 weeker that really does look like a baby to begin with . . . They may grow into looking like a proper baby. (nurse 16)
Several nurses preferred not to care for these tiny infants because of the distress caused by their foetal appearance. This sometimes brought them into direct conflict with their colleagues. One nurse stated, I get a bit angry when people [colleagues] are a little bit negative towards looking after them (nurse 7). Providing physical care presented difficulties and the nurses reflected on some of the practical care difficulties and challenges: The infant was delivered and was foetal, it was definitely foetal. Eyes were fused, skin was just like jelly. It only weighed 400 grams. . . The skin was so gelatinous, it would stick to the sheets and it would stick to anything that it came in contact with. The baby actually had fluffy marks from the sheep skin. It was actually being absorbed into the baby’s skin and there was nothing that we could put around, or do anything with to stop this from actually happening. (nurse 10)
The difference in appearance in only a few weeks could be remarkable, and generally, many of the nurses preferred to work with a baby greater than 28 weeks of gestation because they looked like a proper baby (nurse 16), and not a skinned rabbit (nurse 15).
Protective strategies The nurses frequently used humour to get them through their distress at providing care to these tiny extremely premature babies. The nurses recognised the fine line between amusement and stress relief, and jokes that were dehumanising or insulting. Tendentious jokes of the type used by the nurses often contained the topic of foetal infants. The nurses understood the distress this could cause to others and made a point of emphasising they would never make jokes in earshot of people other than neonatal nurses. Another protective strategy involved the nurses needing to see something that would make them feel positive towards the baby’s survival; therefore, in the early phase, making negative remarks seemed to protect the nurses because being pessimistic might prevent attachment. Attached implied investing emotions and having hope. One nurse stated: © 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 81–89
Caring for extremely premature infants I have a great affection for the tiny babies, whereas some people might be very pessimistic and say, ‘Oh you know it looks like a skinned rabbit’, which is a word I hate using. So they will refer to these babies like that, or say very pessimistic things. (nurse 15)
The pessimism experienced by the nurses could be a response to a difficult situation in which a negative coping style is adopted. It is this coping style that allowed nurses to distance themselves from the baby and family. Being pessimistic could help the nurses diminish the dilemma of caring for the baby that does not resemble the socially accepted image of a baby, thus reducing the intensity of the caregiving. Furthermore, the nurses had all seen what they would regard as poor outcomes of extremely premature birth and so needed something to help them make sense of keeping these tiny babies alive. Some of the nurses had particular ways of looking at this, and for some, positioning the baby as part of a production line allowed them to distance themselves during what they considered to be the very difficult times. One nurse described this phenomenon: It’s a survival technique. These babies are part of the ‘process line’. These are the ‘product’. They are not anything to do with you as a human being and your own humanity. If you say here is a bit of work and this is the outcome of the work, rather than identifying with that as a human being and putting yourself in the isolette, then it’s a survival technique. (nurse 6)
This nurse held the strong view that to be effective and to be able to optimally work with these tiny vulnerable babies and their families, neonatal nurses needed to develop their own techniques and ways of framing to help endure and survive the NICU. However, she highlighted that these ways of framing may only be a temporary measure, until more emotional comfort with the issues around extreme prematurity could be developed. I think each nurse learns their own survival technique for what is a very confronting area. You can either approach it with a certain degree of honesty, or you can learn techniques for putting it on the shelf, and leave it from being too confronting for your own emotions. If you approach it with a degree of honesty then you’ve got no option but to lay it all. . ..till you feel far more comfortable with what happens. (nurse 6)
Attributing personality Although the nurses experienced difficulty providing care to extremely premature babies, they were, however, convinced that babies ≤24 weeks of gestation had personalities. The nurses spent many hours with the babies and felt they were
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able to gauge their likes, dislikes and special quirks. For the nurses, the humanity of the baby was expressed when they perceived the baby as having a personality – replete with its own preferences and the ability to perceive stimuli and react in a positive or negative manner. In seeing personality, these tiny patients could be likened more to babies, rather than foetuses, and this made it easier for them to interact with the baby and to feel engagement and a sense of connectedness to the baby: When I first started working with these babies, people would hand them over and say, ‘This baby has been very naughty you know; it’s a very angry little personality’. [I would think] God, you know you’ve got to be joking, but in fact they have, they have got their little personalities. (nurse 14)
Discussion As there is no research that has explored the difficulty of caring for human infants who resemble foetuses rather than infants, extrapolation to the literature is used in a search for possible explanations. The discussion will include an exploration of the symbolic differences between very premature infants and full-term babies and an exploration of the significant changes that occur as the baby develops in maturity, as these issues seem to be at the heart of the nurses’ dilemmas about the provision of care to very premature infants. The extremely premature infant nursed in the NICU raises philosophical questions about the nature of what it means to be human. For the nurses in the current study, babies ≤ 24 weeks of gestation made them question whether they were nursing babies or foetuses. Perhaps it might not be their ‘humanness’ that is in question, it could be their ‘babyness’ (Green 2007). These babies look more like foetuses than babies. There are certain things that seem to improve the ‘babyness’ (Green 2007) aspect, and these include ‘vitality’ (Brinchmann 2000, p. 143), ‘feisty behaviour’ (Guillemin & Holmstrom 1986, p. 135) or a spark of life that shows some sort of responsiveness. If this spark occurs, human qualities are attributed to the baby. The nurses do not simply nurse the baby in the bed, they also interact with the baby as a person. For the nurses, it is the interaction between the baby and the nurse that seems to be important. This interaction can be difficult because these babies seem to be virtually untouchable in their isolettes and barely recognisable as human (Whittier 1999). Schlomann (1999, p. 166) spoke of the ambiguity of ‘humanness’ and constructed ambiguity as being related to
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physical appearance, and characteristics such as cognitive status and responsiveness of the baby, suggesting that humanness is the ability to relate socially. The nurses in Schlomann’s (1999) study were not sure whether they were caring for a person when they cared for babies with severe disfiguring anomalies. One nurse asked, ‘how do I give good care, what does it mean to care for something that’s not really a person’? (Schlomann 1999, p. 165). Situations where the staff perceived ambiguity of humanness tend to be problematic (Schlomann 1999). Cognitively impaired babies were considered to be ‘nonreclaimable to a human state’ (Schlomann 1999, p. 168). For the nurses in the current study, the human status of infants too immature to survive could be ambiguous. The goal of intensive care is to restore their human status, but when the baby looks foetal or there is no feedback in the way of interaction from the baby to the nurses, the baby becomes the object of work. Such objectification and depersonalisation could be necessary for the nurses as it helps them distance themselves from ethically troubling situations. These techniques include distancing (Nagy 1999) and disembodiment (Schroeder 1992). Kraemer (2006, p. 152)suggested that neonatal nurses rely on ‘detachment, denial and depersonalization’. Perhaps this is true, because denying their emotions might be easier than confronting them. The language surrounding foetuses needs exploration. The foetus born at a stage where it is unable to be saved is generally referred to as a baby, rather than a foetus. The term foetus-infant appears in some texts, with writers emphasising the infant character of the unborn while simultaneously downplaying its morphological immaturity (Isaacson 1996). Williams et al. (2001) found that healthcare professionals rarely used the term ‘foetus’ in their interactions with pregnant women. Whether this is for the benefit of the family or the staff is not fully understood. Such terms as ‘foetus’ could be in keeping with Preston’s (1979) and Schlomann’s (1999) notion of ambiguity, where nurses experienced difficulties caring for babies whose appearance markedly differed from what was considered ideal. Using the term foetus could be a protective mechanism that shielded the nurses from the reality of providing care. Bogdan et al. (1982) also showed that extremely premature babies are referred to as foetuses. The foetal appearance of the baby was problematic for the nurses, and they used minifisms to help themselves and the baby’s parents. A minifism, according to Lawler (1991), is a verbal or behavioural technique, which assists in the management of potentially problematic situations by minimising the size, significance and severity of an event involving a patient. Minifisms are protective and help the nurses © 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 81–89
Original article
behave in a business-as-usual fashion. It helps them maintain their composure. The neonatal nurses used these minifisms to downplay the foetal look of the infant. Each new extremely premature baby brings shock and dismay to the nurses caring from them. The nurses do not ever become accustomed to the appearance of these babies in the time immediately after birth. Badr and Abdallah (2001) suggested the attractiveness of the premature baby can impact on the care it receives, although there is no evidence in the current study to substantiate this. However, it did seem that the nurses’ perceived value of a baby was based in part on its appearance. The extremely premature baby looks different in comparison with their full-term counterpart (Budreau 1987, 1989). Several nurses described how full-term infants were capable of eliciting nurturing behaviours in adults, essential for their survival. These nurturing behaviours include feeding and protection until the infant was able to do these things for himself/herself. Premature infants attached to life support can be seen as a violation of this ideal by nurses (Frey 1995), thus reinforcing the ambiguousness of their status (Schlomann 1999). Attempts to normalise the NICU and personify the extremely premature baby can have a positive effect on the staff morale and may quell doubts about the wisdom of saving tiny babies. Dressing the tiny baby in clothes adds to the illusion that the inhabitant of the incubator is a normal baby. Making a nonbaby appear as baby-like as possible fostered the nurse’s belief that they were caring for a baby not a foetus. Clothing the infant helped facilitate this transition from foetus to baby. Dressing the baby could help make it look like a ‘proper baby’. Greenall (2001) considered the use of the word ‘proper’ and wondered if nurses thought there is something improper about the preterm infant. Neonatal nurses have also been found to attempt to personalise the baby by pointing out to the parents the baby’s likes and dislikes. Some parents are able to see behind the facade, as evidenced by Stinson and Stinson (1983, p. 215) who wrote in their journal: It’s up to the nurses to give mothers the sense that their babies are ‘little people’ and not ‘little things’. Nurses are told to relate little personal anecdotes, ‘even if it’s fabrication’.
Neonatal nurses get to know the babies they care for, and because they spend a large amount of time with the babies, they learn their habits and idiosyncrasies. They form attachments to the baby. It would be easy to assume that extremely premature babies were devoid of anything but biological life. This, however, is not the case. Morris (1999, p. 23) states ‘. . . personalities develop from very early on, ensuring that the work of the NICU is never © 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 81–89
Caring for extremely premature infants
boring. Some babies are quiet and laid back yet quite alert, as if knowing their needs will be attended to in due time’. Even the smallest and sickest of babies are considered to have a personality by the nurses, and normalisation of the NICU environment seemed to be important for them. Stinson and Stinsons (1983, p. 50) commented on the normalisation process: Who are these toys for? Obviously for me and, I think, for the nurses and doctors as well, to help us – to make us – see past the machinery and our own uneasiness about using it, and even to justify using it. Who can doubt the wisdom of heroic efforts to save an infant kept company by ‘his’ toy rabbit.
The ongoing search for the threshold of foetal viability was difficult for the nurses. If the nurses experienced difficulty caring for the infant of ≤24 weeks of gestation, then caring for foetuses at 20 weeks would be more disturbing. Whittier (1999, p. 210) suggested that extremely premature babies are especially subject to metaphoric interpretation because they are ‘such ambiguous subjects, distanced from the onlooker in a state of virtual nonrecognition’. Preston (1979) and Schlomann (1999) also spoke of tiny babies as ambiguous. Metaphors related to extraterrestism have been used in relation to extremely premature babies. Frey (1995) described these babies as being displaced from inner space, described as aliens, proto-humans. The disruption of the visual image by the onlooker has also seen them described as likened to animals, vegetables or even formless matter. Frey (1995, p. 23) suggested that extremely premature babies threaten the onlooker’s own somatic image because, ‘. . . seeing a human body so altered from its normal state that you feel the top of your skull lift slightly from the shock of it’. While the nurses did not seem to be quite this shocked, it was clear that the nurses in the study experienced difficulty with the appearance of the baby. Humour was used as a way of managing the nurses’ distress. Freud saw this type of humour as liberating as it corresponded to a momentary freeing up of energy (Erdelyi 1985). Frey (1995, p. 25) suggested ‘the staff jokes that it will soon report for work in scuba suits to treat 20-weekers swimming in a giant tank of amniotic fluid’. Nurses in the current study suggested something similar to Frey (1995). Behind the humour, the nurses were anxious they would be expected to be ‘foetal farmers’ and that the medical staff will be foetologists. The Frankensteinian nightmare of science gone mad (Williams 1997), coupled with media reports of the miracle survivors of extremely preterm birth, is likely to leave neonatal nurses with a mix of awe, amazement, bewilderment and scepticism about what the future will hold.
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Coupled with the nurses’ concern for the future was a variant on the concept of therapeutic optimism as elucidated by Jansen (2011), where the nurses continue to hope for the best possible outcome for the baby. While maintaining this optimism, the nurses demonstrate an understanding of both the nature of the ongoing research into extreme prematurity and the probability of important risks and benefits for the baby. It is important for neonatal nurses to maintain a sense of positivity and optimism about their nursing work, given that at times they could be regularly confronted with situations that lend themselves to pessimism rather than optimism. Optimism has been associated with personal resilience or the ability to deal with adversity (Jackson 2009). The importance of positive and optimistic environments for nurses should not be underestimated.
nurses used depersonalisation and detachment to prevent themselves from becoming attached to the infant, until they could emotionally handle the situation or engage with the baby’s personality.
Relevance to clinical practice Increasing survival of extremely premature infants will see more nurses caring for babies ≤24 weeks of gestation. Caring for extremely premature babies has been reported as being stressful. It is important to understand the nature of stress facing this highly specialised neonatal nursing workforce. Supportive work environments could help to ameliorate stress, facilitate better care of tiny babies and decrease staff turnover.
Disclosure Conclusion Caring for babies who resembled foetuses was challenging for the nurses. The appearance of the baby was problematic in that it looked more like a foetus than a baby. The nurses managed to find ways of altering the appearance of the foetal infant, so they could deal with caring for such a small and fragile human being, a human being that made them question what it is to be human. Rationally the nurses understood they were caring for a baby, yet visually the baby might not equate with their preconceived notions of what babies look like. The appearance of the baby and the possibility of death or other poor outcome meant that the
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, 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.
References Badr LK & Abdallah B (2001) Physical attractiveness of premature infants affects outcome at discharge. Infant Behavior and Development 24, 129–133. Benner P (1994) Interpretative Phenomenology: Embodiment, Caring and Ethics in Health and Illness. Sage Publications, London. Bogdan R, Brown M & Bannerman Foster S (1982) Be honest but not cruel: staff/parent communication on a neonatal unit. Human Organization 41, 6–16. Braun V & Clarke V (2006) Using thematic analysis in psychology. Qualitative Research in Psychology 3, 77–101. Brinchmann BS (2000) They have to show that they can make it: vitality as a cri-
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terion for the prognosis of premature infants. Nursing Ethics 7, 141–147. Budreau GK (1987) Postnatal cranial molding and infant attractiveness: implications for nursing. Neonatal Network 5, 13–19. Budreau G (1989) The perceived attractiveness of preterm infants with cranial molding. Journal of Obstetric, Gynecologic and Neonatal Nursing 18, 38–44. Casper MJ (1998) The Making of the Unborn Patient: A Social Anatomy of Fetal Surgery. Rutgers University Press, New Brunswick, NJ. Cica N (1998–1999) Abortion Law in Australia. Available at: http://www.aph. gov.au/library/pubs/rp/1998-99/99rp01. htm#major (accessed 25 July 2009). Clarke AC (2004) 2001: A Space Odyssey’. Warner Home Video.
Clarke AC & Kubrick S (1993) 2001: A Space Odyssey. Econo-Clad Books, Minneapolis, MN. Engelhardt HT (1973) Viability, abortion, and the difference between a fetus and an infant. American Journal of Obstetrics and Gynecology 116, 429–434. Erdelyi MH (1985) Psychoanalysis: Freud’s Cognitive Psychology. W.H Freeman and Company, New York, NY. Frey D (1995) Does anybody here think the baby can live? The New York Times 9, 22. Green JA (2007) Balancing Hope with Reality: Caregiving Dilemmas for Neonatal Nurses in Caring for Extremely Premature Babies. Faculty of Health Science, Flinders University, Adelaide SA.
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Original article Greenall FM (2001) Doctor-nurse communication in the neonatal intensive care unit: an anthropological analysis. Journal of Neonatal Nursing 7, 110–114. Guillemin JH & Holmstrom LL (1986) Mixed Blessings: Intensive Care for Newborns. Oxford University Press, Oxford, UK. Henig RM & Fletcher AB (1983) The preemie: more fetus than baby. In Your Premature Baby: The Complete Guide to Preemie Care during that Crucial First Year. Ballantyne Books, New York, NY, pp. 3–22. Isaacson N (1996) The fetus-infant: changing classifications of in utero development in the fetus-infant: changing classifications of in utero development in medical texts. Sociological Forum 11, 457–480. Jackson D (2009) Editorial: the importance of optimism. Journal of Clinical Nursing 18, 1377–1378. Jansen LA (2011) Two concepts of therapeutic optimism. Journal of Medical Ethics 37, 563–566. Koch T (1996) Implementation of a hermeneutic inquiry in nursing: philosophy, rigour and representation. Journal of Advanced Nursing 24, 174–184. Koch T & Harrington A (1998) Reconceptualising rigour: the case for reflexivity. Journal of Advanced Nursing 28, 882–890. Kraemer SB (2006) So the cradle won’t fall: holding the staff who hold the
Caring for extremely premature infants parents in the NICU. Psychoanalytic Dialogues 16, 149–164. Lawler J (1991) Behind the Screens: Nursing Somology, and the Problem of the Body. Churchill Livingstone, Melbourne, Vic., Australia. Marsh B (2003) Proof Babies can Smile in Womb. The Sunday Telegraph, Sydney, NSW, Australia, p. 7. Moore KL & Persaud TVN (2003) The Developing Human: Clinically Oriented Embryology, 7th edn. W.B. Saunders, Philadelphia, PA. Morris M (1999) A nurse’s perspective American. The American Journal of Nursing 99, 23. Nagy S (1999) Strategies used by burns nurses to cope with the infliction of pain on patients. Journal of Advanced Nursing 29, 1427–1433. Preston RP (1979) The Dilemmas of Care: Social and Nursing Adaptations to the Deformed, the Disabled and the Aged. Elsevier, New York, NY. Raines D (1993) Deciding what to do when the patient can’t speak: a preliminary analysis of an ethnographic study of professional nurses in the neonatal intensive care unit. Neonatal Network 12, 43–47. Schlomann P (1999) The place of viability, suffering, and anomalies in ethical decision making in a neonatal intensive care unit. Illness, Crises, and Loss 7, 161–171. Schroeder C (1992) The process of inflicting pain in nursing: caring relationship
or torture? NLN Publications 15, 211–220. Stinson R & Stinson P (1983) The Long Dying of Baby Andrew Little. Brown and Company, Boston, MA. Tisdale S (1986) The Sorcerer’s Apprentice: Medical Miracles and Other Disasters. Henry Holt and Sons, New York, NY. Townshend P (1990) A challenge for neonatal nurses. Nursing Times 86, 38–41. Van Manen M (1990) Researching Lived Experience: Human Science for an Action Sensitive Pedagogy. State University of New York Press, New York, NY. Van Manen M (2006) Writing qualitatively, or the demands of writing. Qualitative Health Research 16, 713–722. Van Manen M (nd) Practising Phenomenological Writing. The University of Alberta. Available at: https://ejournals. library.ualberta.ca/index.php/subsc/arti cle/. . ./10035 (accessed 20 September 2013). Whittier G (1999) The ethics of metaphor and the infant body in pain. Literature and Medicine 18, 210–235. Williams S (1997) Modern medicine and the “uncertain body”: from corporeality to hyperreality. Social Science Medicine 45, 1041–1049. Williams C, Alderson P & Farsides B (2001) Conflicting perceptions of the fetus: person, patient, and ‘nobody’ commodity? New Genetics and Society 20, 225–238.
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Looking like a proper baby: nurses’ experiences of caring for extremely premature infants Janet Green, Philip Darbyshire, Anne Adams and Debra Jackson
Aims and objectives. To explore the ways in which neonatal nurses draw meaning and deal with the challenges associated with caring for extremely premature babies. Background. Current literature suggests that nurses face challenges providing care to certain patients because of their appearance. This article will focus on those difficulties in relation to neonatal nurses caring for infants ≤24 weeks of gestation in the neonatal intensive care unit. Extremely premature babies often have more the appearance of a foetus than the appearance of a baby, and this presented challenges for the neonatal nurses. Design. This paper has used interviews and drew insights from interpretative phenomenology. Methods. This paper used a series of interviews in a qualitative study informed by phenomenology. The analysis of the interview data involved the discovery of thematic statements and the analysis of the emerging themes. Results. This paper outlines the difficulties experienced by neonatal nurses when caring for a baby that resembles a foetus more than it does a full-term infant. The theme the challenges of caregiving was captured by three subthemes: A foetus or a viable baby?; protective strategies and attributing personality. Conclusion. This study identified that neonatal nurses experience a range of difficulties when providing care for an infant who resembled a foetus rather than a full-term baby. They employed strategies that minimised the foetal appearance and maximised the appearance and attributes associated with a newborn baby. Relevance to clinical practice. Increasing survival of extremely premature infants will see nurses caring for more babies ≤24 weeks of gestation. Caring for extremely premature babies has been reported as being stressful. It is important to understand the nature of stress facing this highly specialised neonatal nursing workforce. Supportive work environments could help to ameliorate stress, facilitate better care of tiny babies and decrease staff turnover.
What does this paper contribute to the wider global clinical community?
• The number of extremely prema-
•
•
ture babies in the neonatal nursery is increasing, and neonatal nurses are the primary caregivers to the baby and family. Neonatal nurses experience challenges when caring for babies who resemble a foetus rather than a term infant. Neonatal nurses need to acknowledge the difficulties they face when caring for extremely premature babies in order to help the parents bond with their baby.
Key words: extreme prematurity, infant care, interview, neonatal nurses, qualitative research Accepted for publication: 18 March 2014
Authors: Janet Green, PhD, RN, MBioethics, Senior Lecturer, Faculty of Health, University of Technology, Sydney, NSW; Philip Darbyshire, PhD, RN, Professor of Nursing, Schools of Nursing & Midwifery, Monash University and Flinders University and Director, Philip Darbyshire Consulting Ltd, Adelaide, SA; Anne Adams, PhD, RN, retired, Debra Jackson, PhD, RN,
© 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 81–89, doi: 10.1111/jocn.12608
Professor, Faculty of Health, University of Technology, Sydney, NSW, Australia Correspondence: Janet Green, Senior Lecturer, Faculty of Health, University of Technology, PO Box 222, Lindfield, Sydney, NSW 2070, Australia. Telephone: +61 2 95145740. E-mail: [email protected]
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Introduction A foetus and baby are different, and as such, a distinction can be made between the two entities. The foetus has biological life, whereas the baby has personal human life (Engelhardt 1973). The ontological and moral status of the foetus changes with foetal viability. The concept of foetus is more challenging than its mere definition. In Australia, the states differ as to when a foetus is deemed viable, and this ranges from 14–22 weeks of gestation (Cica, 1998– 1999). At this stage, the foetus would be unlikely to survive outside the maternal womb, even with neonatal intensive care. Viability is used to decide when there is an obligation to the foetus. Biology does not equate with social values, and obligation is a social, not a biological category, while viability is purely a biological entity (Engelhardt 1973). With technology that can visualise the foetus in utero, it almost becomes common property. Isaacson (1996) suggested that because of the ability to visualise the foetus, the unborn can be termed ‘foetus-infant’. This is where the foetus in utero and the baby ex utero are blurred as a single entity. The visualisation of the activity of the foetus emphasises the character of the unborn, while ignoring its morphological immaturity. Visualisation of the foetus ensures its personification, where the foetus is seen as a separate human being with its own identity, personality and character. The foetus in ‘2001 A Space Odyssey’ (Clarke & Kubrick 1993, Clarke 2004) has been portrayed as free floating and larger than life (Casper 1998) and seems to have taken on a life of its own. Prospective parents may not conceptualise their unborn child as a foetus. Ultrasound now plays an important role in the construction of the relationship between the pregnant woman, her partner, the foetus and the social world (Williams et al. 2001). Inferences of personhood are now derived from ultrasound technology, as the inhabitant of the womb can be seen kicking, growing (Williams et al. 2001) and engaging in endearing infant-like behaviours such as thumb sucking. In a study by Williams et al. (2001), prospective parents thought of their foetuses as babies, even as early as 12 weeks of gestation. The prospective parents believed the foetus looked like a baby on the ultrasound scan. A newspaper article by Marsh (2003) showed ultrasound scans where the facial features of the foetus could be seen. While they are still biologically foetal, it is easy to recognise them as human – as future healthy full-term babies. The status of the foetus is therefore socially, culturally and politically constructed, and its status will depend on who is attributing the meaning.
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Caring for certain types of patients can be very challenging and distressing for nurses (Schlomann 1999), such as burns patients, as elucidated by Nagy (1999). Extremely premature babies have an appearance that is obviously human (Williams et al. 2001), but that appearance challenges notions associated with the expectations of what a newborn infant should look like, feel like and behave like. Neonatal nurses need to reconcile these notions of image, tactile and behavioural disparity and draw meaning from their experiences if they are to provide quality care for such tiny human beings.
Background The foetus and infant differ in morphology, development and maturity. The extremely premature infant can be described as being suspended between ‘womb and air’ (Whittier 1999). Its head is too big for its body, a peculiarity that will correct itself with time (Tisdale 1986). The extremely premature baby has transparent skin because it lacks fat deposits. It is covered in fine hair called lanugo, and this hair could be described as fur-like. This furry-red foetus-infant acts differently from its full-term counterpart who resembles a baby, and acts like an acceptable newborn. Whittier (1999) suggested the extremely premature infant speaks a different body language in many ways, which is unlike that of its full-term counterpart. The embryo is called a foetus at the ninth week from the time of conception up to the moment of birth, when it is referred to as a baby or infant. In the case of the extremely premature baby, the baby is born during the foetal period where the organs are present, but not yet fully functional and are still undergoing further development (Moore & Persaud 2003). Thus, the baby born ≤24 weeks of gestation is in no way the finished product. The normal length of pregnancy is considered to be after the 37th completed week and before the end of the 42nd completed week. The early weeks of gestation are devoted to growth, while the final weeks are devoted to maturity and finishing off the finer details. Babies born ≤24 weeks of gestation are closer to viability than term. Very early in gestation the basic form has started. There are fingers, toes, facial features all encased in a thin covering of skin (Henig & Fletcher 1983). At ≤24 weeks of gestation, the baby is physically frail. The eyes are fused, the skin is gelatinous, and anything that touches the baby will stick to it. The heart can be seen to be visibly beating through the chest wall as their ribs are thin. Arteries and veins can be seen (Henig & Fletcher 1983).
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When the extremely premature infant is born, it resembles a foetus rather than a baby. The foetus-infant is reliant on technology for even its most rudimentary functions. This is very distressing for parents, who have been expecting to deliver a full-term baby – one who is cute and able to be cuddled and nursed. Henig and Fletcher (1983, p. 4) stated, ‘. . .the majority of preemie parents are frightened, grieved, and sometimes can be repulsed by the first sight of their stunningly tiny babies. It is important to recognise and accept these feelings – and to remember that a very small preemie is still, by rights, a foetus’. Neonatal nurses are the primary caregivers to babies in the neonatal intensive care unit (NICU) and have cited caring for infants 5 years of experience with caring for babies ≤ 24 weeks of gestation. They needed to be English speaking, willing to participate and have the interview audio-taped.
that valuable time is taken away from other children while we watch a fetus die.
Data collection
The work of Raines (1993) and Townshend (1990) generated important insights into some of the challenges associated with nursing extremely premature babies – babies who in previous generations would simply have not survived their birth. However, the field of neonatology has advanced significantly in the almost three decades that have elapsed since their seminal works, and therefore, it would seem timely to re-examine this issue of challenges faced by nurses caring for extremely premature infants.
The data were collected by the first author, an experienced neonatal nurse. The individual and group interviews were conducted with a purposive sample of neonatal nurses. The questions asked during the semi-structured interviews were based on findings from a questionnaire and explored the nurses’ experiences of caring for infants of ≤24 weeks of gestation.
Aim Findings presented in this paper are drawn from a larger mixed methods doctoral thesis (Green 2007). The focus of this paper is the qualitative data that explores the experiences of neonatal nurses caring for extremely premature babies. © 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 81–89
Ethical considerations A participant information sheet was provided to the questionnaire and interview participants. Verbal and written consent was obtained from the interview participants with the option of asking questions for clarification. Confidentiality for all participants was assured. The names of the interview participants were not included on the transcripts, and the data were secured in a locked drawer. This research project was approved by the relevant institutional research
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ethics committee. Due to the sensitive nature of the topic, counselling was made available to participants if required, although none of the nurses required this service.
Data analysis A qualitative method informed by phenomenological insights was used to interpret the interviews because of the need to understand the nurses’ experiences of caregiving dilemmas surrounding extremely premature babies. Phenomenology, the study of lived experience, asks the question ‘what is this or that kind of experience like’ (Van Manen 1990, p. 9). Reflecting on the lived experience cannot occur while the person is still living it; therefore, in phenomenology, it is retrospective reflection on an experience that the person has already lived through that is of interest to the researcher. According to Van Manen (nd), phenomenological research should be seen as a dynamic interplay between four procedural activities. These include turning to a phenomenon of interest and investigating it. The experience should be investigated as it is lived rather than how it is conceptualised. The essential themes should be reflected upon, and the description of the phenomenon should be provided through writing. The identification and interpretation of the nurses’ accounts of their experience was achieved through thematic analysis and reflective processes. Meaning units or themes were created and clustered together. Thematic analysis identifies meaningful patterns, stances and concerns and is more important than looking at words or phrases (Benner 1994). According to Braun and Clarke (2006, p.12), themes need to provide an accurate understanding of the ‘big picture’. The text from the interviews was examined in a careful and systematic way. 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). Creating themes is an active interpretative process. Themes help the researcher to focus on the significant issues in the data. It is through the act of reading and writing that insights emerge (Van Manen 2006). Significant ideas from the text were converted to a written thematic statement. The nurses’ stories held accounts of their experience of caring for extremely premature babies. These accounts were structured to form the whole or a full description of the phenomenon.
Rigour Koch and Harrington (1998) spoke of the preoccupation of qualitative researchers with methodological rigour, which is
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seen as a legacy of the positivist epistemology. Rigour is part of the validity of the qualitative study; however, rigour deals specifically with how a research paradigm’s ontology and epistemology inform the interpretative methodology which is used to answer the question (Koch 1996). Data were collected by the first researcher, herself an experienced neonatal nurse. To ensure integrity of data, data and emerging interpretations were regularly audited and validated by the coauthors. A decision trail was provided to establish the rigour and trustworthiness of the study.
Results This paper outlines the difficulties experienced by neonatal nurses when caring for a baby that resembles a foetus more than it does a full-term infant. The theme of the challenge of caregiving was captured by three subthemes: A foetus or a viable baby?; protective strategies and attributing personality. While the nurses understood that they were caring for a human being, the differences in appearance between the extremely premature infant and a full-term baby led them to reflect on whether they were caring for a foetus or a viable baby. Protective strategies was about the nurses providing physical care to a human being that resembled a foetus, but protecting themselves from becoming attached to the infant before the infant declared itself worthy of their optimism. Attributing personality emphasised infant behaviour and interaction. When the nurses could see something such as feisty behaviour or an individual personality in the baby, they became more optimistic in caring for the infant. The themes are explored in more detail below.
A foetus or viable baby? When caring for extremely premature babies, there were times when the nurses questioned whether they were caring for foetuses or babies. The nurses all spoke about the experience of providing care to babies who resembled foetuses more than babies. It seemed important to the participant nurses that the infant should possess at least some of the recognisable physical characteristics of what the nurses perceived to be a baby. One nurse stated, . . . people are shocked when they first see a baby that size, because they don’t look like a baby (nurse 16). Like participant 16, other nurses also disclosed feeling shocked by the baby’s appearance: We’ve been told they’re 23 or 24 [weeks] and then they come around [to the NICU] looking like a little golf ball head with absolutely no features and very foetal (nurse 14). These tiny infants were considered very vulnerable and fragile human babies by the nurses, yet the appearance of © 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 81–89
Original article
the extremely immature baby was sometimes at odds with that view. One nurse explained how different they looked: We call them foetuses because they have such a foetally [sic] appearance. A larger baby, they look like a baby should look. You very rarely see a 23/24 weeker that really does look like a baby to begin with . . . They may grow into looking like a proper baby. (nurse 16)
Several nurses preferred not to care for these tiny infants because of the distress caused by their foetal appearance. This sometimes brought them into direct conflict with their colleagues. One nurse stated, I get a bit angry when people [colleagues] are a little bit negative towards looking after them (nurse 7). Providing physical care presented difficulties and the nurses reflected on some of the practical care difficulties and challenges: The infant was delivered and was foetal, it was definitely foetal. Eyes were fused, skin was just like jelly. It only weighed 400 grams. . . The skin was so gelatinous, it would stick to the sheets and it would stick to anything that it came in contact with. The baby actually had fluffy marks from the sheep skin. It was actually being absorbed into the baby’s skin and there was nothing that we could put around, or do anything with to stop this from actually happening. (nurse 10)
The difference in appearance in only a few weeks could be remarkable, and generally, many of the nurses preferred to work with a baby greater than 28 weeks of gestation because they looked like a proper baby (nurse 16), and not a skinned rabbit (nurse 15).
Protective strategies The nurses frequently used humour to get them through their distress at providing care to these tiny extremely premature babies. The nurses recognised the fine line between amusement and stress relief, and jokes that were dehumanising or insulting. Tendentious jokes of the type used by the nurses often contained the topic of foetal infants. The nurses understood the distress this could cause to others and made a point of emphasising they would never make jokes in earshot of people other than neonatal nurses. Another protective strategy involved the nurses needing to see something that would make them feel positive towards the baby’s survival; therefore, in the early phase, making negative remarks seemed to protect the nurses because being pessimistic might prevent attachment. Attached implied investing emotions and having hope. One nurse stated: © 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 81–89
Caring for extremely premature infants I have a great affection for the tiny babies, whereas some people might be very pessimistic and say, ‘Oh you know it looks like a skinned rabbit’, which is a word I hate using. So they will refer to these babies like that, or say very pessimistic things. (nurse 15)
The pessimism experienced by the nurses could be a response to a difficult situation in which a negative coping style is adopted. It is this coping style that allowed nurses to distance themselves from the baby and family. Being pessimistic could help the nurses diminish the dilemma of caring for the baby that does not resemble the socially accepted image of a baby, thus reducing the intensity of the caregiving. Furthermore, the nurses had all seen what they would regard as poor outcomes of extremely premature birth and so needed something to help them make sense of keeping these tiny babies alive. Some of the nurses had particular ways of looking at this, and for some, positioning the baby as part of a production line allowed them to distance themselves during what they considered to be the very difficult times. One nurse described this phenomenon: It’s a survival technique. These babies are part of the ‘process line’. These are the ‘product’. They are not anything to do with you as a human being and your own humanity. If you say here is a bit of work and this is the outcome of the work, rather than identifying with that as a human being and putting yourself in the isolette, then it’s a survival technique. (nurse 6)
This nurse held the strong view that to be effective and to be able to optimally work with these tiny vulnerable babies and their families, neonatal nurses needed to develop their own techniques and ways of framing to help endure and survive the NICU. However, she highlighted that these ways of framing may only be a temporary measure, until more emotional comfort with the issues around extreme prematurity could be developed. I think each nurse learns their own survival technique for what is a very confronting area. You can either approach it with a certain degree of honesty, or you can learn techniques for putting it on the shelf, and leave it from being too confronting for your own emotions. If you approach it with a degree of honesty then you’ve got no option but to lay it all. . ..till you feel far more comfortable with what happens. (nurse 6)
Attributing personality Although the nurses experienced difficulty providing care to extremely premature babies, they were, however, convinced that babies ≤24 weeks of gestation had personalities. The nurses spent many hours with the babies and felt they were
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able to gauge their likes, dislikes and special quirks. For the nurses, the humanity of the baby was expressed when they perceived the baby as having a personality – replete with its own preferences and the ability to perceive stimuli and react in a positive or negative manner. In seeing personality, these tiny patients could be likened more to babies, rather than foetuses, and this made it easier for them to interact with the baby and to feel engagement and a sense of connectedness to the baby: When I first started working with these babies, people would hand them over and say, ‘This baby has been very naughty you know; it’s a very angry little personality’. [I would think] God, you know you’ve got to be joking, but in fact they have, they have got their little personalities. (nurse 14)
Discussion As there is no research that has explored the difficulty of caring for human infants who resemble foetuses rather than infants, extrapolation to the literature is used in a search for possible explanations. The discussion will include an exploration of the symbolic differences between very premature infants and full-term babies and an exploration of the significant changes that occur as the baby develops in maturity, as these issues seem to be at the heart of the nurses’ dilemmas about the provision of care to very premature infants. The extremely premature infant nursed in the NICU raises philosophical questions about the nature of what it means to be human. For the nurses in the current study, babies ≤ 24 weeks of gestation made them question whether they were nursing babies or foetuses. Perhaps it might not be their ‘humanness’ that is in question, it could be their ‘babyness’ (Green 2007). These babies look more like foetuses than babies. There are certain things that seem to improve the ‘babyness’ (Green 2007) aspect, and these include ‘vitality’ (Brinchmann 2000, p. 143), ‘feisty behaviour’ (Guillemin & Holmstrom 1986, p. 135) or a spark of life that shows some sort of responsiveness. If this spark occurs, human qualities are attributed to the baby. The nurses do not simply nurse the baby in the bed, they also interact with the baby as a person. For the nurses, it is the interaction between the baby and the nurse that seems to be important. This interaction can be difficult because these babies seem to be virtually untouchable in their isolettes and barely recognisable as human (Whittier 1999). Schlomann (1999, p. 166) spoke of the ambiguity of ‘humanness’ and constructed ambiguity as being related to
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physical appearance, and characteristics such as cognitive status and responsiveness of the baby, suggesting that humanness is the ability to relate socially. The nurses in Schlomann’s (1999) study were not sure whether they were caring for a person when they cared for babies with severe disfiguring anomalies. One nurse asked, ‘how do I give good care, what does it mean to care for something that’s not really a person’? (Schlomann 1999, p. 165). Situations where the staff perceived ambiguity of humanness tend to be problematic (Schlomann 1999). Cognitively impaired babies were considered to be ‘nonreclaimable to a human state’ (Schlomann 1999, p. 168). For the nurses in the current study, the human status of infants too immature to survive could be ambiguous. The goal of intensive care is to restore their human status, but when the baby looks foetal or there is no feedback in the way of interaction from the baby to the nurses, the baby becomes the object of work. Such objectification and depersonalisation could be necessary for the nurses as it helps them distance themselves from ethically troubling situations. These techniques include distancing (Nagy 1999) and disembodiment (Schroeder 1992). Kraemer (2006, p. 152)suggested that neonatal nurses rely on ‘detachment, denial and depersonalization’. Perhaps this is true, because denying their emotions might be easier than confronting them. The language surrounding foetuses needs exploration. The foetus born at a stage where it is unable to be saved is generally referred to as a baby, rather than a foetus. The term foetus-infant appears in some texts, with writers emphasising the infant character of the unborn while simultaneously downplaying its morphological immaturity (Isaacson 1996). Williams et al. (2001) found that healthcare professionals rarely used the term ‘foetus’ in their interactions with pregnant women. Whether this is for the benefit of the family or the staff is not fully understood. Such terms as ‘foetus’ could be in keeping with Preston’s (1979) and Schlomann’s (1999) notion of ambiguity, where nurses experienced difficulties caring for babies whose appearance markedly differed from what was considered ideal. Using the term foetus could be a protective mechanism that shielded the nurses from the reality of providing care. Bogdan et al. (1982) also showed that extremely premature babies are referred to as foetuses. The foetal appearance of the baby was problematic for the nurses, and they used minifisms to help themselves and the baby’s parents. A minifism, according to Lawler (1991), is a verbal or behavioural technique, which assists in the management of potentially problematic situations by minimising the size, significance and severity of an event involving a patient. Minifisms are protective and help the nurses © 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 81–89
Original article
behave in a business-as-usual fashion. It helps them maintain their composure. The neonatal nurses used these minifisms to downplay the foetal look of the infant. Each new extremely premature baby brings shock and dismay to the nurses caring from them. The nurses do not ever become accustomed to the appearance of these babies in the time immediately after birth. Badr and Abdallah (2001) suggested the attractiveness of the premature baby can impact on the care it receives, although there is no evidence in the current study to substantiate this. However, it did seem that the nurses’ perceived value of a baby was based in part on its appearance. The extremely premature baby looks different in comparison with their full-term counterpart (Budreau 1987, 1989). Several nurses described how full-term infants were capable of eliciting nurturing behaviours in adults, essential for their survival. These nurturing behaviours include feeding and protection until the infant was able to do these things for himself/herself. Premature infants attached to life support can be seen as a violation of this ideal by nurses (Frey 1995), thus reinforcing the ambiguousness of their status (Schlomann 1999). Attempts to normalise the NICU and personify the extremely premature baby can have a positive effect on the staff morale and may quell doubts about the wisdom of saving tiny babies. Dressing the tiny baby in clothes adds to the illusion that the inhabitant of the incubator is a normal baby. Making a nonbaby appear as baby-like as possible fostered the nurse’s belief that they were caring for a baby not a foetus. Clothing the infant helped facilitate this transition from foetus to baby. Dressing the baby could help make it look like a ‘proper baby’. Greenall (2001) considered the use of the word ‘proper’ and wondered if nurses thought there is something improper about the preterm infant. Neonatal nurses have also been found to attempt to personalise the baby by pointing out to the parents the baby’s likes and dislikes. Some parents are able to see behind the facade, as evidenced by Stinson and Stinson (1983, p. 215) who wrote in their journal: It’s up to the nurses to give mothers the sense that their babies are ‘little people’ and not ‘little things’. Nurses are told to relate little personal anecdotes, ‘even if it’s fabrication’.
Neonatal nurses get to know the babies they care for, and because they spend a large amount of time with the babies, they learn their habits and idiosyncrasies. They form attachments to the baby. It would be easy to assume that extremely premature babies were devoid of anything but biological life. This, however, is not the case. Morris (1999, p. 23) states ‘. . . personalities develop from very early on, ensuring that the work of the NICU is never © 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 81–89
Caring for extremely premature infants
boring. Some babies are quiet and laid back yet quite alert, as if knowing their needs will be attended to in due time’. Even the smallest and sickest of babies are considered to have a personality by the nurses, and normalisation of the NICU environment seemed to be important for them. Stinson and Stinsons (1983, p. 50) commented on the normalisation process: Who are these toys for? Obviously for me and, I think, for the nurses and doctors as well, to help us – to make us – see past the machinery and our own uneasiness about using it, and even to justify using it. Who can doubt the wisdom of heroic efforts to save an infant kept company by ‘his’ toy rabbit.
The ongoing search for the threshold of foetal viability was difficult for the nurses. If the nurses experienced difficulty caring for the infant of ≤24 weeks of gestation, then caring for foetuses at 20 weeks would be more disturbing. Whittier (1999, p. 210) suggested that extremely premature babies are especially subject to metaphoric interpretation because they are ‘such ambiguous subjects, distanced from the onlooker in a state of virtual nonrecognition’. Preston (1979) and Schlomann (1999) also spoke of tiny babies as ambiguous. Metaphors related to extraterrestism have been used in relation to extremely premature babies. Frey (1995) described these babies as being displaced from inner space, described as aliens, proto-humans. The disruption of the visual image by the onlooker has also seen them described as likened to animals, vegetables or even formless matter. Frey (1995, p. 23) suggested that extremely premature babies threaten the onlooker’s own somatic image because, ‘. . . seeing a human body so altered from its normal state that you feel the top of your skull lift slightly from the shock of it’. While the nurses did not seem to be quite this shocked, it was clear that the nurses in the study experienced difficulty with the appearance of the baby. Humour was used as a way of managing the nurses’ distress. Freud saw this type of humour as liberating as it corresponded to a momentary freeing up of energy (Erdelyi 1985). Frey (1995, p. 25) suggested ‘the staff jokes that it will soon report for work in scuba suits to treat 20-weekers swimming in a giant tank of amniotic fluid’. Nurses in the current study suggested something similar to Frey (1995). Behind the humour, the nurses were anxious they would be expected to be ‘foetal farmers’ and that the medical staff will be foetologists. The Frankensteinian nightmare of science gone mad (Williams 1997), coupled with media reports of the miracle survivors of extremely preterm birth, is likely to leave neonatal nurses with a mix of awe, amazement, bewilderment and scepticism about what the future will hold.
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Coupled with the nurses’ concern for the future was a variant on the concept of therapeutic optimism as elucidated by Jansen (2011), where the nurses continue to hope for the best possible outcome for the baby. While maintaining this optimism, the nurses demonstrate an understanding of both the nature of the ongoing research into extreme prematurity and the probability of important risks and benefits for the baby. It is important for neonatal nurses to maintain a sense of positivity and optimism about their nursing work, given that at times they could be regularly confronted with situations that lend themselves to pessimism rather than optimism. Optimism has been associated with personal resilience or the ability to deal with adversity (Jackson 2009). The importance of positive and optimistic environments for nurses should not be underestimated.
nurses used depersonalisation and detachment to prevent themselves from becoming attached to the infant, until they could emotionally handle the situation or engage with the baby’s personality.
Relevance to clinical practice Increasing survival of extremely premature infants will see more nurses caring for babies ≤24 weeks of gestation. Caring for extremely premature babies has been reported as being stressful. It is important to understand the nature of stress facing this highly specialised neonatal nursing workforce. Supportive work environments could help to ameliorate stress, facilitate better care of tiny babies and decrease staff turnover.
Disclosure Conclusion Caring for babies who resembled foetuses was challenging for the nurses. The appearance of the baby was problematic in that it looked more like a foetus than a baby. The nurses managed to find ways of altering the appearance of the foetal infant, so they could deal with caring for such a small and fragile human being, a human being that made them question what it is to be human. Rationally the nurses understood they were caring for a baby, yet visually the baby might not equate with their preconceived notions of what babies look like. The appearance of the baby and the possibility of death or other poor outcome meant that the
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, 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.
References Badr LK & Abdallah B (2001) Physical attractiveness of premature infants affects outcome at discharge. Infant Behavior and Development 24, 129–133. Benner P (1994) Interpretative Phenomenology: Embodiment, Caring and Ethics in Health and Illness. Sage Publications, London. Bogdan R, Brown M & Bannerman Foster S (1982) Be honest but not cruel: staff/parent communication on a neonatal unit. Human Organization 41, 6–16. Braun V & Clarke V (2006) Using thematic analysis in psychology. Qualitative Research in Psychology 3, 77–101. Brinchmann BS (2000) They have to show that they can make it: vitality as a cri-
88
terion for the prognosis of premature infants. Nursing Ethics 7, 141–147. Budreau GK (1987) Postnatal cranial molding and infant attractiveness: implications for nursing. Neonatal Network 5, 13–19. Budreau G (1989) The perceived attractiveness of preterm infants with cranial molding. Journal of Obstetric, Gynecologic and Neonatal Nursing 18, 38–44. Casper MJ (1998) The Making of the Unborn Patient: A Social Anatomy of Fetal Surgery. Rutgers University Press, New Brunswick, NJ. Cica N (1998–1999) Abortion Law in Australia. Available at: http://www.aph. gov.au/library/pubs/rp/1998-99/99rp01. htm#major (accessed 25 July 2009). Clarke AC (2004) 2001: A Space Odyssey’. Warner Home Video.
Clarke AC & Kubrick S (1993) 2001: A Space Odyssey. Econo-Clad Books, Minneapolis, MN. Engelhardt HT (1973) Viability, abortion, and the difference between a fetus and an infant. American Journal of Obstetrics and Gynecology 116, 429–434. Erdelyi MH (1985) Psychoanalysis: Freud’s Cognitive Psychology. W.H Freeman and Company, New York, NY. Frey D (1995) Does anybody here think the baby can live? The New York Times 9, 22. Green JA (2007) Balancing Hope with Reality: Caregiving Dilemmas for Neonatal Nurses in Caring for Extremely Premature Babies. Faculty of Health Science, Flinders University, Adelaide SA.
© 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 81–89
Original article Greenall FM (2001) Doctor-nurse communication in the neonatal intensive care unit: an anthropological analysis. Journal of Neonatal Nursing 7, 110–114. Guillemin JH & Holmstrom LL (1986) Mixed Blessings: Intensive Care for Newborns. Oxford University Press, Oxford, UK. Henig RM & Fletcher AB (1983) The preemie: more fetus than baby. In Your Premature Baby: The Complete Guide to Preemie Care during that Crucial First Year. Ballantyne Books, New York, NY, pp. 3–22. Isaacson N (1996) The fetus-infant: changing classifications of in utero development in the fetus-infant: changing classifications of in utero development in medical texts. Sociological Forum 11, 457–480. Jackson D (2009) Editorial: the importance of optimism. Journal of Clinical Nursing 18, 1377–1378. Jansen LA (2011) Two concepts of therapeutic optimism. Journal of Medical Ethics 37, 563–566. Koch T (1996) Implementation of a hermeneutic inquiry in nursing: philosophy, rigour and representation. Journal of Advanced Nursing 24, 174–184. Koch T & Harrington A (1998) Reconceptualising rigour: the case for reflexivity. Journal of Advanced Nursing 28, 882–890. Kraemer SB (2006) So the cradle won’t fall: holding the staff who hold the
Caring for extremely premature infants parents in the NICU. Psychoanalytic Dialogues 16, 149–164. Lawler J (1991) Behind the Screens: Nursing Somology, and the Problem of the Body. Churchill Livingstone, Melbourne, Vic., Australia. Marsh B (2003) Proof Babies can Smile in Womb. The Sunday Telegraph, Sydney, NSW, Australia, p. 7. Moore KL & Persaud TVN (2003) The Developing Human: Clinically Oriented Embryology, 7th edn. W.B. Saunders, Philadelphia, PA. Morris M (1999) A nurse’s perspective American. The American Journal of Nursing 99, 23. Nagy S (1999) Strategies used by burns nurses to cope with the infliction of pain on patients. Journal of Advanced Nursing 29, 1427–1433. Preston RP (1979) The Dilemmas of Care: Social and Nursing Adaptations to the Deformed, the Disabled and the Aged. Elsevier, New York, NY. Raines D (1993) Deciding what to do when the patient can’t speak: a preliminary analysis of an ethnographic study of professional nurses in the neonatal intensive care unit. Neonatal Network 12, 43–47. Schlomann P (1999) The place of viability, suffering, and anomalies in ethical decision making in a neonatal intensive care unit. Illness, Crises, and Loss 7, 161–171. Schroeder C (1992) The process of inflicting pain in nursing: caring relationship
or torture? NLN Publications 15, 211–220. Stinson R & Stinson P (1983) The Long Dying of Baby Andrew Little. Brown and Company, Boston, MA. Tisdale S (1986) The Sorcerer’s Apprentice: Medical Miracles and Other Disasters. Henry Holt and Sons, New York, NY. Townshend P (1990) A challenge for neonatal nurses. Nursing Times 86, 38–41. Van Manen M (1990) Researching Lived Experience: Human Science for an Action Sensitive Pedagogy. State University of New York Press, New York, NY. Van Manen M (2006) Writing qualitatively, or the demands of writing. Qualitative Health Research 16, 713–722. Van Manen M (nd) Practising Phenomenological Writing. The University of Alberta. Available at: https://ejournals. library.ualberta.ca/index.php/subsc/arti cle/. . ./10035 (accessed 20 September 2013). Whittier G (1999) The ethics of metaphor and the infant body in pain. Literature and Medicine 18, 210–235. Williams S (1997) Modern medicine and the “uncertain body”: from corporeality to hyperreality. Social Science Medicine 45, 1041–1049. Williams C, Alderson P & Farsides B (2001) Conflicting perceptions of the fetus: person, patient, and ‘nobody’ commodity? New Genetics and Society 20, 225–238.
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