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EMPIRICAL STUDIES doi: 10.1111/j.1471-6712.2012.01076.x Skin-to-skin care for dying preterm newborns and their parents – a phenomenological study from the perspective of NICU nurses Ingjerd G. Kymre RN, Pediatric Nurse (PN), MA, PhD (Student)1 and Terese Bondas RN, PHN, MNSc, LicNSc, PhD(Professor)2 1 PHS, Center for Practical Knowledge, University of Nordland/UiN, Bodø, Norway and 2Institute of Nursing and Health, University of Nordland, Bodø, Norway Scand J Caring Sci; 2013; 27: 669–676 Skin-to-skin care for dying preterm newborns and their parents – a phenomenological study from the perspective of NICU nurses Background: Consequences of separation between preterm newborns and their parents have been discussed in many aspects, thus skin-to-skin care (SSC) has become common practice in Scandinavian Neonatal Intensive Care Units (NICUs) since the 1980s. The International workshop on Kangaroo Mother Care (KMC), 2009, recommends implementation of continuous KMC as the gold standard pervading all medical and nursing care, based on empirical studies and clinical guidelines and they suggest that KMC may be used during terminal care in agreement with parents. Parents have a strong desire to be near their child and give support and emotional comfort when the condition of the child requires it, and it has been suggested that medical staff expect parents to be with the neonates, and therefore, encourages them to hold the neonate while it is dying. The practice of SSC at the end of life has been under-researched, however. Aim: The aim of this study, which is part of a larger study on neonatal nursing care, was to describe the phenomenon of how nurses enact SSC for dying preterm newborns and their parents. Design: A phenomenological reflective life world design. Setting and participants: A purposive sample of 18 nurses from three Scandinavian NICUs. Introduction Parents have a strong desire to be near their child and give support and emotional comfort when the condition Correspondence to: Ingjerd Gåre Kymre, PHS, Nordland University, 8049 Bodø, Norway. E-mail: Ingjerd.gare.kymre@uin.no Findings: The essential meaning of the phenomenon was expressed as strong belief in the urgency of SSC in providing mutual proximity and comfort for dying preterm newborns and their parents. The nurses act upon this belief and upon an engagement in securing the best possible present and future experiences of being close, in which the SSC is understood as a necessary premise in achieving the intended optimal conditions. The findings are elaborated in relation to previous caring and nursing research and phenomenology. Conclusions: Skin-to-skin care for dying preterm newborns and their parents is the preferred caring practice among Scandinavian NICU nurses who consider it of major importance to facilitate proximity and comfort through SSC when the newborn is still alive. The authors suggest this practical knowledge from NICU nurses perspective to be acknowledged in discussions concerning end-of-life care for preterm newborns and their parents and we recommend more formal establishment of this practice. Further research is needed on parents’ experiences of skin-to skin caring in this vulnerable end of life situation of ‘being with’ their dying newborn. Keywords: Skin-to-skin care, end-of-life care, neonatal nursing, dying preterm newborns, mutual experience, proximity in dying, phenomenology, reflective lifeworld research. Submitted 30 March 2012, Accepted 31 July 2012 of the child requires it (1). Consequences of separation between preterm newborns and parents have been discussed in many aspects, thus skin-to-skin care (SSC) has become common practice in Scandinavian Neonatal Intensive Care Units (NICUs) since the 1980s. Positive effects and benefits have been documented through empirical studies worldwide since the first introductions of the practice as Kangaroo Mother Care (KMC), inspired by the Instituto Materno Infantil in Colombia after 1978 © 2012 The Authors Scandinavian Journal of Caring Sciences © 2012 Nordic College of Caring Science 669 670 I.G. Kymre, T. Bondas (2–7). Its main benefits are physiological stabilization, thermal regulation and stimulation of maternal lactation (2). Intermittent SSC, which means limited sessions, is the most implemented method in affluent settings (5). An expert group of the International Network, from the 7th International Workshop on KMC, 2009, recommends implementation of continuous KMC as the gold standard pervading all medical and nursing care, based on empirical studies and clinical guidelines (5). Nursing Research Paper Literature Review

Decreased pain response during painful procedures, positive effects on sleep and improved brain maturation are documented effects of KMC (5, 7). Other outcomes are psychosocial aspects like improved parent–infant interaction (5). The network report suggests that KMC may be used during terminal care in agreement with parents (5). A Norwegian study found that care offered to dying infants and their families changed significantly in many respects from 1987–1988 to 1997–1998 (8), which reflected that parents were increasingly more present at the time of the child’s death and involved in the process to forgo life support. An increase in the proportion of dying infants for whom withholding or withdrawal of life support preceded their death was found. An American study from the period 1999 to 2008 found that the primary mode of death in their NICU was the withdrawal of life-sustaining support (9).

Those findings may represent a trend, and exemplify elements related to the background of this study context, which concerns situations in NICUs where medical and nursing staff and the parents realise that the preterm newborn’s condition is not compatible with life or a decision has been made to stop life-supporting treatment. When the neonate is dying, medical staff expected parents to be with the baby, and encourage the parents to hold him/her (10). According to Armentrout (11), parents have an intense need to carry their deceased newborn with them as they move forward with their lives, and she emphasised the importance of providing parents with an opportunity to spend time with their infant as a member of the family, without all the tubes and wires. However, studies concerning the phenomenon of practicing SSC for dying preterm newborns and their parents are limited. Aim The aim of this study, which is part of a larger study on neonatal nursing care, was to describe the phenomenon of how nurses enact SSC for dying preterm newborns and their parents. Method The approach that was chosen to this study is reflective lifeworld research, as developed by Dahlberg, Dahlberg and Nyström (12), which in its turn is based on the phenomenological philosophy of Husserl and Merleau-Ponty. The approach assumes an open attitude to the phenomenon, in this case the nurses’ relationship to SSC in dying. The aim of lifeworld research is to describe and elucidate the lived world in a way that expands our understanding of human being and human experience, and the clarification of meaning as it is given (12). Here, it means articulating what is at stake for nurses when they encourage SSC between dying preterm newborns and their parents. Nursing Research Paper Literature Review

 The lifeworld refers to the world as experienced. Within this approach, it is central to illuminate the essence or structure of meanings that characterises the phenomenon (13). According to Dahlberg, the essences are their phenomena and the phenomena are their essences. The research challenge for this study has been to illuminate the essential structure from this particular context of SSC to find the style of this particular phenomenon. Participants A purposive sample of 18 nurses from three NICUs in Sweden, Denmark and Norway, (six from each) were interviewed at their workplace. They were selected by unit leaders based on the criteria that they were willing to participate and were available to be interviewed during two selected days and afternoons. Nurses who had been working in a NICU for more than 5 years were preferred. All available nurses were female, though this was not a criterion. The Swedish nurses had been practicing 3–24 years (median 13) in a NICU, the Norwegian; 4–22 years (median 11) and the Danish; 7–22 years (median 12). 12 nurses had a higher degree or education in paediatric, neonatal, intensive, surgery or public health nursing, NIDCAP-education or other specialized courses. NICUs were selected because they showed a commitment, through homepages or in other ways, to SSC as a part of their practice. The three were all large units. Data collection in three different countries was meant to possibly represent variations of experience and meaning. Interviews The nurses were asked to describe their lived experiences concerning the phenomenon that was chosen (12, 14). The first author carried out the interviews. 17 of the 18 participants answered yes to the opening question: ‘Have you ever brought a preterm newborn to a parent’s body for SSC when you knew it was going to die?’ The last participant had been present when such situations took place. To find out what they considered important, the next question was: ‘Can you tell me about one or several such situations?’ Probing questions were asked to obtain details, and to clarify unclear statements. The participants could more or less in detail remember situations of caring © 2012 The Authors Scandinavian Journal of Caring Sciences © 2012 Nordic College of Caring Science A phenomenological study from the perspective of NICU nurses for parents and newborns within this context. The interviews took place in November and December 2009, and the digitally recorded material was transcribed verbatim during spring 2010. None of the authors had any connection to the selected NICUs. Ethical considerations This study was approved by the Regional Ethical Committee (15) and the Norwegian Social Science Data Services (16), which reviews projects based on guidelines for research ethics. The research is in line with the ethical guidelines for nursing research in the Nordic countries (17). The material was stored according to the guidelines of the Norwegian National Committee for Research Ethics in the Social Sciences and the humanities, NESH (18). Permission to carry out the study was obtained from the head nurses or physician of the hospital units. The nurses had received a letter that introduced them to the aim of the interview. Permission to record the interviews was given from each participant, and participants were assured that the information would be treated confidentially. The participants were informed about their right to withdraw from the study at any time. Analysis In line with Dahlberg et al. (12), the entire descriptions were initially read to get a sense of a whole. Nursing Research Paper Literature Review

Preunderstanding, including personal beliefs and theory drawn from personal experience with the phenomenon was set aside in the sense of ‘bridling’, to allow the essential meaning of the nurse’s utterances to manifest themselves. The main point of bridling is to bring us closer to the meaning of the phenomenon without limiting the research openness (12). The descriptions were divided into units of meanings, which sometimes made it necessary to break up significant shifts in meaning. Clusters of descriptions were analysed and organized, and constitutive elements that described various meanings to the phenomenon were identified. A new whole was written to emphasise the essence of the phenomenon, having in mind that according to Dahlberg (13), describing essences is a clarification of meaning as it is given, and any meaning that we discover belongs to the phenomenon. The phenomenon being analysed was SSC for dying preterm newborns and their parents, and the research process led to a new written understanding of the phenomenon’s essential meaning of parts and whole. Findings The various and rich descriptions of the phenomenon indicated that independent of three different participating 671 Scandinavian countries, the essential meaning of the phenomenon was expressed as a strong belief in the urgency of SSC in providing mutual proximity and comfort for dying preterm newborns and their parents. The nurses act upon this belief and upon an engagement in securing the best possible present and future experiences of being close, in which the SSC is the preferred caring practice and is understood as a necessary premise in achieving the intended optimal conditions for mutuality. The notion of loss was connected to an importance for parents of having been close to or with the preterm newborn for being able to articulate and acknowledge the meaning of their loss. To provide this aspect, tubes and wires were removed after the transfer to the parent’s body, after establishing skin-to-skin contact, sometimes very quickly because of the newborn’s poor medical condition. Expressing strong belief Strong belief was expressed through the ways nurses described how they reasoned, acted and gave SSC priority. The notion ‘I believe’ was used, following gestures underlining strong belief and engagement. Furthermore, this strong belief was expressed as a commitment in the context of caring rather than in the context of treatment: ‘I believe it is good for the newborns because I have seen well-being in preterm newborns receiving SSC so many times,’ exemplifies how belief is expressed, as well as ‘I just believe instinctively that dying newborns should not be alone, but in the arms.’ Alone means in the incubator or not close to another body. Words indicating a belief in what are the best possible ways to act were used generally through the descriptions. ‘She laid skin to skin constantly through two days and nights because we thought that every moment was her last’ and ‘We have taken out babies from the incubator because we know there is no way back’, are examples where an explanation justified with a ‘because’ indicates an implicit belief in facilitating SSC as the right thing to do. Realizing urgency in transferring, and limited, valuable time for ‘being with’ A quotation that exemplifies how a decision to facilitate SSC is made without dwelling is, ‘Sometimes I grasp the urgency of parent’s holding the newborn when it is still moving.’ When it is realised that the newborn is going to die, or a decision is made to stop life-supporting treatment, there is no doubt among the nurses asked about transferring the newborn close to its parent’s body, skin to skin. ‘The preterm newborn should have the opportunity to be with its parents before passing away,’ a nurse claimed with an extra emphasis on the notion ‘should’. Urgency was expressed in terms of giving SSC priority by describing how the tracheal tube is kept until the © 2012 The Authors Scandinavian Journal of Caring Sciences © 2012 Nordic College of Caring Science 672 I.G. Kymre, T. Bondas dying newborn is placed against a parent’s bare chest to secure that the moment of dying takes place there when the newborn is still alive. Pulse frequency and other perceptual parameters sometimes indicate limited time and that the newborn will die very soon, and several nurses said, ‘We always facilitate SSC if we know the newborn will not survive.’ In contrast to keeping the tracheal tube, examples of removing it before transferring from the incubator were described as stressful and less optimal; ‘The newborn died at once, so it was more dramatic and shocking than we had expected, – they should have had more time together.’ A concern about SSC while keeping the newborn alive beyond a necessary hospital transfer was described, as well as the concern of not achieving it, and it was expressed in the following: Nursing Research Paper Literature Review

Together with the transport, team we made a decision not to transfer a newborn to another hospital nearby, because if we did he would have been separated from his parents. He would have been placed into a transport incubator, and if so, the medical staff would have the responsibility to keep him alive during the time of the transport and you cannot do that, so there was no prospect of moving him. We let him lie skin to skin, and he took his final breath on his mother’s chest. The matter of dignity for the dying newborns was raised as challenging in regard to simultaneous urgency of the situation. This manifested itself in terms of a rapid transfer from the incubator to the parent’s body when the child is close to death. This included concerns about the newborns feeling uncomfortable, concerns that were identified in several descriptions. The transfer became a problem to which nurses needed to attend by being sensitive and careful in the practical act of transferring, in that SSC was still given priority. Occasionally, the newborns do not die very quickly, but nurses still characterize time with their parents as limited. The time of being with, skin to skin, was also characterized as valuable time, whether they managed to have this time or not. Expressing engagement An engagement in skin-to-skin caring was expressed as double-oriented from the nurse’s perspective. The descriptions involved how nurses imagined the newborns’ experiences, consciousness and feelings, together with observing and understanding physiological parameters. ‘Actually, I do not know how conscious the newborn is, or about its sensory experience,’ was expressed by one nurse, and another said, ‘Because he was very ill, I am uncertain of what he was sensing. I think it depends on the various physical condition and medications, if they are conscious or in a doze, but I believe that the skin-to-skin contact is good for the newborns’. A projection of dying newborns having a feeling of being scared was expressed: ‘I think that skin-to-skin contact will help the newborn in not feeling scared of experiencing the lack of air.’ An engagement with how parents experience the situation was as an example expressed by a nurse’s reflections about how difficult it must be not to have had the chance to ‘hold your newborn close to your body, – I think it is a deep-seated need in women to feel their baby against their skin,’ she said. Facilitating mutual proximity and comfort A lived particular example of the SSC in a situation of dying was this; ‘He was lying naked in her arms in that the mother could see his face, he was just wearing a diaper, she lay in a bed and she held him into her skin against her breast. Then we removed the tracheal tube.’ Experiencing closeness, touch and comfort is emphasized as an aim in terms of both giving and receiving between the dying newborn and its parents. A receiving dimension was exemplified by quotations such as ‘A newborn should not have to die alone, but feel the proximity’, and ‘The newborn receives proximity the short time it is here’ Another said, ‘Both the parents and the newborn should get the opportunity to feel the proximity even if there is an awful incident going on’ In addition, a giving dimension was described as, ‘There is no other way that you can transmit that you are close, more than through skin-to-skin contact’. and ‘They were with him, and could follow him on his way, in that he was not alone.’ Skin-to-skin care was also expressed as a way to prevent suffering. A nurse said that she hoped that the baby would experience comfort just for a short while ‘to let the baby perceive safety in hearing the mother’s heart and voice’, and further, ‘as long as the baby is able to feel the mother’s heart beat, he or she shall do so, I think.’ Another description expressed the quality of SSC as ‘Contact with skin is different from contact with fabrics,’ and feeling comfort skin to skin, noted some, included absence of pain and hunger. A few experiences exempl … Nursing Research Paper Literature Review