Journal of Pediatric Nursing (2014) xx, xxx–xxx
Parents' Experiences of Their Premature Infants' Transportation From A University Hospital NICU to NICU at Two Local Hospitals Marie Dahlen Granrud RN, MSc a,b , Elin Ludvigsen RN, MSc b , Birgitta Andershed RNT, PhD c,⁎ a
Department of Nursing, Hedmark University College, Elverum, Norway Neonatal Intensive Care Unit, Innlandet Hospital Trust, Norway c Department of Nursing, Gjøvik University College, Norway, and Department of Palliative Research Centre, Ersta Sköndal University College and Ersta Hospital, Stockholm, Sweden b
Received 22 April 2013; revised 23 January 2014; accepted 24 January 2014
Key words: Premature; Parents; Transition; Transportation; Experience
The aim of this study was to describe how the parents of premature infants experience the transportation of their baby from the neonatal intensive care unit at a university hospital (NICU-U) to such a unit at a local hospital (NICU-L). This descriptive qualitative study comprises interviews with nine sets of parents and two mothers. The qualitative content analysis resulted in one theme: living in uncertainty about whether the baby will survive, and three categories: being distanced from the baby; fearing that something would happen to the baby during transportation; and experiencing closeness to the baby. The results also revealed that the parents experienced developmental, situational and health– illness transitions. © 2014 Elsevier Inc. All rights reserved.
A PREMATURE BABY presents a challenge for the majority of parents, who are plunged into a reality for which they are unprepared. They may therefore be in a vulnerable situation and feel both disappointed and guilty about failure to achieve a full-term pregnancy (Shin & White-Trout, 2007) as well as fearing that their baby will die. Being unprepared for the premature birth may make it difficult for them to feel like parents (Lindberg & Öhrling, 2008). Many expectant parents prepare themselves for a fully developed infant and grieve over the lost ‘dream baby’, which may hinder the attachment between parents and child (Tandberg & Steinnes, 2009). In addition, the bonding may be negatively affected by the parents' stay in a technologically intensive clinical
⁎ Corresponding author: Birgitta Andershed, RNT, PhD. E-mail address: [email protected]. 0882-5963/$ – see front matter © 2014 Elsevier Inc. All rights reserved. http://dx.doi.org/10.1016/j.pedn.2014.01.014
environment where they observe their child's struggle to survive. As a result, such parents often experience more stress and anxiety than those of full-term infants (Aagaard & Hall, 2008; Kaaresen, Rønning, Ulvund, & Dahl, 2006; Tandberg, Pettersen, Vårdal, & Rönnestad, 2013; Turan, Basbakkal, & Özbek, 2008). Being the parent of a premature infant involves transitions that differ from those of parents with a healthy, full-term baby. These transitions often occur simultaneously within a fairly short period. Schumacher and Meleis (1994) described three common types of transition: developmental, situational and health–illness. A situational transition is the transportation of the infant from the neonatal intensive care unit to a local hospital (Fowlie, Booth, & Skeoch, 2004). This can entail a risk, for example cerebral haemorrhage (Mohamed & Alv, 2010). Parents often fear that their child will not tolerate the transfer and that it will cause her/his condition to deteriorate.
2 The parents also worry that the local hospital does not possess the necessary expertise (Hall, 2005). Studies have found that parents would like the infant to be closer to home but are anxious and troubled about the unknown (Donohue, Hussey-Gardner, Sulpar, Fox, & Aucott, 2009; Hall, 2005). Communication at an early stage prior to transportation combined with good preparation of the parents can improve their experience (Hall, 2005; Hanrahan et al., 2007; Rowe & Jones, 2008). Ensuring contact with healthcare professionals from the local hospital while the baby is still at the university hospital is described as important for the parents (van den Berg & Lindh, 2011). In addition, it is vital that the healthcare professionals who accompany the baby in the road ambulance are highly experienced (Peitersen, Arrøe, & Pryds, 2008). Although premature infants are often transported in road ambulances between neonatal care units and hospitals, few studies describe the parents' experiences. This study was motivated by the lack of research describing how parents experience the transportation of their premature infant and what this separation can entail. Another reason is the authors' long experience of transfers by road ambulance leading to challenges for new families. It is therefore important to deepen our knowledge and increase understanding of the parents' situation. Consequently, the aim of this study was to describe how the parents of premature infants experience the transportation of their baby from the neonatal intensive care unit at a university hospital (NICU-U) to such a unit at a local hospital (NICU-L).
M.D. Granrud et al. The infants, some of whom were multiple-birth siblings, were born in weeks 26 + 0–32 + 0 (median 28 weeks) of the gestation period.
Context The NICU-U in the study is a high-tech medical care unit for babies born as early as gestational week 23 + 0. This means that it treats many extremely premature infants and employs a great deal of advanced technology. The babies are underdeveloped and often very ill. When their health status is sufficiently stable, they are transferred to NICU-L where they remain hospitalised for periods ranging from weeks to months. The NICU-L treats babies from gestational week 28 + 0 and upwards and is also characterised by advanced technology although to a lesser extent than the NICU-U. The parents in the study had a premature baby who was born at the NICU-U where it remained for a period ranging from several days to a few months, after which it was transferred to the NICU-L at one of two local hospitals. On transfer the infants were at different gestational ages, and their medical condition varied, but in general they had less need of advanced monitoring. The transportation took place by road ambulance, and the infant was placed in a transport incubator. A nurse and a pediatrician from the NICU-L accompanied the baby during transportation, which took between 2 and 3 hours.
Data Collection Design and Method This descriptive qualitative study comprises qualitative interviews analysed by means of content analysis (Graneheim & Lundman, 2004).
Participants From April to June, 2011, seven sets of parents were consecutively selected at two neonatal intensive care units at two different local hospitals. The interviews took place at the local hospitals and were conducted by MG and EL as close to the discharge date as possible. Additional four sets of parents were chosen retrospectively due to the lack of premature babies during the period. These interviews were held at the parents' home 3–8 months after discharge. The inclusion criteria were parents of a premature baby born at a university hospital and transferred to a local hospital and ability to speak Norwegian. The exclusion criterion was prior experiences of pre-term delivery. Two fathers declined to participate, thus 11 mothers (22–40 years, median 28) and nine fathers (23–40 years, median 32) took part in the study.
Qualitative interviews (Kvale & Brinkmann, 2009) were conducted with both parents simultaneously. As the mother and the father might have a different focus and reactions after a premature birth (Fegran, 2009; Jackson, 2006), it was decided to interview them together so that they could complement each other in order to elicit variations in their experience. In view of the fact that two fathers declined to participate, two interviews were conducted with only the mother present. Two of the authors conducted the interviews. The opening question was: “Can you please tell us about your experiences of your child's transfer to the local hospital?” An interview guide was used to cover specific areas of the parents' experiences before, during and after the transfer of the infant. Probing questions (e.g. Can you describe that more clearly? and How did you feel?) were posed to obtain a deeper understanding, and the parents were encouraged to speak freely about their experiences. Three of the interviews took place in the home of the parents, and the others were carried out in the respective care units at the local hospital. The infant was present during four of the interviews, which at times created some disturbance. The interviews, each of which lasted for about 1 hour, were audiotaped and later transcribed verbatim.
Parent's Experiences
Data Analysis The interviews were analysed using inductive qualitative content analysis, which can vary in depth and level of abstraction (Graneheim & Lundman, 2004). The analysis commenced by reading the transcribed interviews several times to acquire an overall understanding. Thereafter, the text was sorted into the following three content areas: before, during and after the transfer of the infant. The text in the content areas was then divided into abstracted meaning units in line with the aim of the study. Each meaning unit was condensed and labelled with a code to the key message embedded in the text. The codes were manually analysed and compared for each set of parents as well as between sets, and for the parents' experiences before, during and after the transfer. Various sub-categories emerged from the codes, and these were compiled in a matrix. Those that belonged together were grouped into categories. During the analysis, patterns in the parents' experiences were continuously sought. Three categories and nine sub-categories were formulated. Finally, a theme emerged in which the latent content of the parents' experiences became visible (Table 1). During the analysis the authors continuously discussed the process. When disagreement arose, the discussion continued until consensus was achieved. Several quotations from the interviews are presented to illustrate the content of the categories.
Ethics The parents received both oral and written information about the study. They were informed that participation was voluntary, that they could withdraw at any time without giving a reason and that this would in no way affect the treatment of their baby. An application was submitted to the regional committees for medical and health research for permission to conduct the project, which they assessed Table 1
Overview of the theme, categories and subcategories.
Living in uncertainty about whether the baby will survive Being distanced from the baby - A sense of not owning the baby - A lack of information - Relating to many people Fearing that something would happen to the baby during transportation - A sense of separation - Wanting to be in the ambulance - Safety of the infant Experiencing closeness to the baby - Increased accessibility - Having to relate to fewer people - Closer to home
3 as being exempt from the need for approval. The project was authorized by the data protection officer at Oslo University Hospital.
Findings The results led to a main theme: Living in uncertainty about whether the baby will survive. The parents described the premature birth as unexpected, difficult and chaotic. They expressed anxiety that something could happen to their baby or that she/he would die. They wanted confirmation that all would be well, but no one could give them such assurance. A mother described it in the following way: “No one could promise us that it would be all right. I understand that they can't do that, but it was very hard not being able to obtain reassurance that things would go well.” The parents experienced the environment at the neonatal intensive care units as frightening, in addition to the fact that their infant was totally dependent on advanced technical equipment. They described many overwhelming impressions and alarming situations that made it almost impossible to be close to their child. They found it difficult to comprehend that the tiny, critically ill infant in the incubator belonged to them. Their fear and insecurity is illustrated by the following statement: “I found it really terrifying to go through that door – I never knew what I would find.” Anxiety about something happening to the baby was strong and continued throughout the entire hospital stay. The main theme Living in uncertainty about whether the baby will survive consisted of the following categories: (1) being distanced from the baby, (2) fearing that something would happen to the baby during transportation, and (3) experiencing closeness to the baby. The theme, categories and sub-categories are presented in Table 1.
Being Distanced From the Baby The parents experienced physical and mental distance from the baby while it was in the NICU-U. Several reported that they needed help and support to enter into physical contact with her/him. Some sets of parents felt that their child belonged to the hospital. One mother said: “Everything belonged to them and in a way I felt as if the baby belonged to the hospital as well.” The parents expressed a sense of not owning the baby. One father said: “I felt that they decided when we could do things – yes, they really did. It was as if they decided over our heads a bit.” Several of the parents found it difficult that the nurses told them what to do and that the nurses had the main responsibility for the care. The parents also considered that they were not included enough in the care and nursing of their child. Several mothers commented: “It took a long time for me to realise that it was my child.”
4
M.D. Granrud et al.
Parents experienced a lack of information concerning their child's health. The majority had few or no consultations with a doctor at the NICU-U. Many parents felt a need to be present during the physician's rounds and to ask her/him about their child – something they were not allowed to do. As one mother said: I don't care what the doctor says about other children, I just care about my own child. I wanted to know what the doctor had to say. I wasn't allowed to and that was a pity.
Some sets of parents felt that the decision about whether their baby was well enough to be transferred varied from doctor to doctor. Apart from one set of parents, they received no information about the care unit to which the child was to be transferred, and this was experienced as a shortcoming. Most of the parents held the view that relating to many people at the NICU-U was challenging. One father said: “There were different nurses every day and you had to repeat everything each time. I've never shaken hands with so many people before.” The parents felt that there was a multitude of different nurses. A large number of staff members inevitably mean that different advice will be given. One mother commented: It (the NICU-U) was big and very complex… In the course of 16 days, I counted that I'd spoken to 16 different nurses, midwives and children's nurses about breastfeeding. And when I talked to the sixteenth person on the sixteenth day who gave me the sixteenth piece of advice about how to get started – well, I just lost it completely in the lactation room.
Having to relate to so many people contributed to the parents' feeling of distance from their child. Moreover, it was difficult for new staff members to pay attention to the parents' experiences when first encountering the baby.
Fearing That Something Would Happen to the Baby During Transportation Most parents were present when their child was collected by ambulance for transfer to the local hospital. They were worried about whether the infant would tolerate the journey and described their fear that something would happen. One father related with tears in his eyes: I was nervous as I thought it was a bit too soon for our little girl to make such a journey. I really believed that. I wasn't afraid of … there was a doctor there naturally, but it was the drive itself I was worried about. I wondered a bit about whether she would be able to cope with the driver slamming on the brakes.
One mother was concerned about the fact that when she was breastfeeding at the NICU-U she had been told to sit as quietly as possible to reduce stress in the baby. Consequent-
ly, she found it difficult to accept that the infant was to be transferred by ambulance and said: “So he was going to lie in a vehicle where he would be tossed around in all directions. I think that was a bit frightening. That's what I was most worried about. And the fact that he was so tiny.” Several of the parents mentioned the risk of cerebral hemorrhage. One mother stated: “I thought about this cerebral haemorrhage business then; they are still quite small.” The father continued: “Maybe they're too small to cope with it?” Both mothers and fathers were afraid of losing control over the child and experienced a sense of separation. They found the separation during the transportation difficult. One mother mentioned that the transfer was frightening because she could not see what was happening. Another said the fact that an unfamiliar nurse came and took the baby away was difficult. Others felt that it was distressing to send the baby away while they themselves remained at the university hospital. One mother related: The accompanying doctor and nurse know what they're doing. It's not the first time they have done it but it's the first time they have collected my child. They've never held my baby before – all infants are different. So it was very scary. I kept thinking ‘Where are you now…. where are you now…. what are you doing now?’
Several of the parents expressed wanting to be in the ambulance during the transfer. One father who very much wanted to do so was told that there was no room. He said: “It seemed a bit odd. They placed both girls in the incubator and there were three ambulance personnel and one nurse from here. They explained as best they could that there wasn't room.” One set of parents was informed at an early stage that they could not accompany their baby in the ambulance. They said: “We could well understand that because if anything happened, there was no one to take care of us.” One father had googled on transportation and discovered that there had been a great deal of discussion about the transportation of premature infants and that it should preferably take place by helicopter. Another father stood and watched his child being placed in the transport incubator. He wondered about the safety of the infant in the ambulance and whether it was secured in the incubator. His child was lying in a ‘nest’ of diapers and blankets and he asked: “Shouldn't the baby be better secured?” Another father said: “Goodness, he's not very well secured if anything should happen.” The parents were happy when they got the message that their children had arrived safely at the local hospital and one father said: “We sighed with relief and said thank goodness, now they've arrived safely.” Other parents said that as long as they did not hear anything, everything was fine.
Experiencing Closeness to the Baby The parents described that they developed a more intense awareness of having a baby after it had arrived at the local
Parent's Experiences hospital. They perceived their child as being more accessible if they could visit whenever they wanted. However, some of the parents mentioned that the baby became unstable and did poorly after transportation. These parents nevertheless described increased accessibility despite the baby's more unstable condition. They were surprised about their child's deterioration, as they had not received information about it beforehand. However, other parents had received such information and according to one mother: They said he might become stressed. And be very, very tired for perhaps two or three days. That he might lose weight and be listless and so on. So I was very well prepared for this, but it didn't happen. And I was delighted.
Several also said that they had a greater sense of belonging with their child when she/he was removed from the incubator and placed in a cot. One mother said: “It was only when he was put in a cot that I started to feel that he was actually mine.” Several parents were unsure about whether the expertise at the local hospitals was equally good as at the university hospital. However, most of them considered it a relief to come to a smaller care unit, which meant having to relate to fewer people. For the parents it was important to have a personal contact person among the nurses. The parents were happy that they had come closer to home as well as to their family and friends, especially parents who had older children. One mother said: “It was lovely to be close to my family. I was given my own hotel room even though I intended to sleep at home. I felt I was made very welcome.”
Discussion The results of this study highlight the fact that parents feared that something might happen to their child and that he/ she could die. The entire transfer process was overshadowed by uncertainty, as most neonatal deaths are due to prematurity (Siegel, Gardner, & Dickey, 2011). The parents described feelings such as fear, uncertainty and chaos. This is in agreement with previous studies of reactions to premature birth (Aagaard & Hall, 2008; Jackson, 2006; Mueller-Nix, Forcada-Guex, Pierrehumbert, Jaunin, & Borgini, 2004; Singer et al., 1999; Turan et al., 2008). The sense that it was not their own child was particularly strong and reinforced by the fact that the baby was in an incubator surrounded by a great deal of monitoring equipment. Several parents dreaded entering the NICU-U, as they were afraid of what they might encounter, which is in agreement with other studies (Aagaard & Hall, 2008; Arockiasamy, Holsti, & Albersheim, 2008; Fowlie & McHaffie, 2004; Kaaresen et al., 2006; Shaw et al., 2009; Turan et al., 2008). As the high-tech neonatal intensive care
5 unit environment may seem frightening to parents, it is crucial that nurses reflect on and are familiar with this situation (Fegran, Helseth, & Fagermoen, 2008). The parents in our study felt as if the hospital “owned” their child and that they had to ask for permission to have physical contact with her/him (cf. Aagaard & Hall, 2008; Lindberg & Öhrling, 2008). The nurses' approach is crucial for the parents' perception of their healthcare encounters at a difficult time. Studies indicate that they have both positive and negative experiences of the encounter with the nurses, which affects how they feel (Fowlie & McHaffie, 2004; Hall, 2005). The parents considered it important that nurses treat the whole family with compassion and respect during the crisis caused by the transition (Hanrahan, Gates, Attar, Lang, Frohna, & Clark, 2007). The parents were of the opinion that they had received too little information in the NICU-U. Studies reveal that such parents have a great need for understandable information that is adapted to their situation (Fowlie & McHaffie, 2004; Ward, 2010). After a premature birth they may be in a state of acute crisis, making it difficult to absorb information (Lindberg & Öhrling, 2008). It may well be that the parents in our study were given information but failed to understand it. Donohue et al. (2009) reported that parents find it easier to communicate with nurses and that they receive more attention from nurses than from doctors. Our results highlight the fact that parents wanted more information from doctors about their child's health status. Moreover, there was a lack of information about the care unit to which the infant was to be transferred. Regarding the fear that something could happen to their child during the actual transportation, it emerged that the mothers were more concerned about the separation than the fathers, who were more worried about the transportation itself, such as how the baby would be secured (cf. Donohue et al., 2009; Gibbins & Chapman, 1996), whether she/he could tolerate the slamming on of brakes and about the equipment used. There is an ongoing debate about how to secure premature infants during transportation, which was mentioned by one of the fathers in the study. Studies have established that transport per se poses a risk to the premature infant (Attar & Bratton, 2007; Donohue et al., 2009; Hall, 2005; Mohamed & Alv, 2010; Senthilkumar, Corpuz, Ratnavel, Sinha, & Mohinuddin, 2011). However, research in this area is sparse, and there is a lack of both national and international guidelines. While on the one hand transportation is associated with a risk of something happening to the infant, it is also seen as a positive and joyful step (Hall, 2005). Some of the parents felt relieved that their child was well enough to be transferred while others wanted the child to remain at the university hospital for a longer period. One of the changes experienced at the local hospital was that there were fewer nurses to relate to, which was described as positive by the parents, because it allowed them to get to know the nurses better. This differs from a study (Hanrahan et al., 2007) reporting that parents experience stress in a hospital where there are fewer nurses with responsibility for
6 the baby as they may worry that the child will not receive the necessary care. The transfer means that the family is closer to home, which was important for those who had older children. When a premature infant is admitted to the NICU-L the whole family is involved, including siblings. The brothers and sisters make preparations and are often just as happy about the new family member as their parents, which makes the family situation less tense. The study reveals that the parents' feelings for the baby become stronger after transfer to the local hospital. This may be because their child is more stable, has grown and been moved from an incubator to a cot. As her/his condition stabilises, the parents gradually assume more responsibility (Fegran, 2009). The entire period – from having a sick, premature infant at the NICU-U, its transportation to the local hospital up to the time when the baby gains a little weight and its health improves – reveals that parents and their child undergo different transitions in a short space of time (cf. Meleis, 2010; Schumacher & Meleis, 1994). The parents not only have to undergo a development transition to parenthood but also situational and health–illness transitions, which are intertwined. According to Shin & White-Traut (2007, p. 94), “the time when the infant can be discharged from the NICU” and “the time when the infant can be removed from the incubator” are two important turning points for personal development (cf. Jackson, Ternestedt, & Schollin, 2003). This corresponds well with the results of our study in which parents described experiencing a greater sense of belonging with their child when they arrived at the NICU-L and she/he was moved from the incubator to a cot. These turning points can be compared with a health–illness transition. The parents feel worried, anxious and afraid due to their child's critical situation as well as uncertainty about whether she/he will survive. In addition, they experience stress and helplessness when standing beside their child and being unable to do anything to support her/him. Being an onlooker when one's own child is suffering from serious symptoms can in itself lead to suffering. It is likely that the parents' state of health corresponds with their child's health–illness transition; when the child is poorly the parents are poorly, and when the child is a little better, the parents also feel a little better. They are thus intertwined with their child and dependent on her/his condition. The transfer from the NICU-U to the NICU-L by road ambulance can also be seen as a situational transition. The parents in our study experienced worry and fear about the transfer and the safety of their child. In particular, the mothers felt that they had lost control over the situation (cf. Arockiasamy et al., 2008; Obeidat, Bond & Callister, 2009). The separation between the parents and their child may affect the bond between parent and child as well as the development of their identity (Rojas, Shirley, & Rush, 2011). The mother's development transition is often described as becoming a mother (Jackson, 2006), on which several studies have focused (Mercer, 2004; Shin & White-Trout,
M.D. Granrud et al. 2007). There are fewer descriptions of becoming a father. However, Deave & Johnson (2008) described the father's responsibility, overwhelming feelings and confusion in the first few weeks after the birth. The father can be an outsider in the critical situation that arises in relation to the rapid and unexpected birth of a premature infant (Hollywood & Hollywood, 2011; Jackson et al., 2003). The lack of opportunity to make contact with the baby can result in delayed parenthood for both parents. It is important for nurses to help and support families to achieve healthy transitions. Schumacher & Meleis (1994) described subjective well-being, role mastery and positive relationships as indicators of healthy transitions. Therefore it is important that the parents are well prepared for the transportation. van den Berg & Lindh (2011) stated that healthcare professionals at the two hospitals involved are responsible for arranging the transportation. They added that parents need up-to-date information and personal communication with nurses at the NICU-U as well as the NICU-L prior to transportation. It is essential that the family is given the opportunity to establish a trusting relationship with a primary nurse (contact person) from the NICU-L as soon as possible (Fegran & Helseth, 2009). Well-prepared parents seemed to have a better experience of the transport and the new care unit than those who were unprepared (van den Berg & Lindh, 2011). The mother in our study who described how her child would be transported by people who had not previously seen or touched the infant had a frightening experience. Her distress and anxiety might have been reduced if the family had met the nurse beforehand, thus enabling the latter to create a trusting relationship.
Credibility The participants consisted of eleven sets of parents – six from one local hospital and five from the other. In four cases it was necessary to obtain the required number of participants 8 months retrospectively. Nevertheless, the parents obtained retrospectively could recall the details of their child's transfer, which may be due to the strong impact of these experiences. The participants varied in terms of sex, age, education, multiple births and whether or not they had older children. This variation in experiences can strengthen the credibility of the study and also increase transferability (Graneheim & Lundman, 2004) to other parents and similar contexts. However, we cannot guarantee saturation of the data, as the baby–mother–father triad can differ greatly depending on how the delivery was experienced, the infant's condition and the situation of both the mother and the father. Though interviews with both parents yielded very important information, conducting interviews with both mothers and fathers impacted the ability to achieve saturation of data and
Parent's Experiences also the transferability of the findings, as such can be viewed as a weakness of the study. A strength of the study is that a joint interview was conducted with each set of parents, which can provide variation in the data material. One parent often confirmed what the other parent said by a short comment or a nod. However, a weakness is that their individual narrative may have been influenced by that of their partner. Nevertheless, the interviews contained rich content, and both mothers and fathers were actively involved in the dialogues. A strength of the analysis was that all authors participated both individually and together (Graneheim & Lundman, 2004), leading to creative and reflective discussions throughout the analysis process.
Conclusion The study resulted in a deeper understanding of the parents' situation and the challenges they face in the transition from the university hospital to the local hospital. They had difficulty adapting to the parental role and relating to the transfer of their child to another hospital. Uncertainty proved to be the strongest emotion during the entire process. This uncertainty was primarily grounded in the fear that their child would not survive. Parents also described uncertainty arising from the large number of nurses they had to relate to, especially at the NICU-U. They often received different information and advice that led to increased uncertainty and frustration. Parents need continuity of nursing staff, up-todate information and personal communication with nurses at the NICU-U as well as the NICU-L prior to transportation. Well-prepared parents seemed to have a more positive experience of the transport and the new care unit than those who were less well-prepared. The knowledge and experience provided by this study can serve to improve the continuity of nursing care as well as cooperation between university hospitals and local hospitals prior to transportation. It is hoped that this will lead to increased awareness among those who provide care to such parents and their children, thereby reducing the stress they experience.
References Aagaard, H., & Hall, E. O. C. (2008). Mothers' experiences of having a preterm infant in the neonatal care unit: A meta-synthesis. International Pediatric Nursing, 23, e26–e36. Arockiasamy, V., Holsti, L., & Albersheim, S. (2008). Fathers' experiences in the neonatal intensive care unit: A search for control. Pediatrics, 121, e215–e222. Attar, M. A., & Bratton, S. L. (2007). Effect of back transport on readmissions and follow-up care. Pediatrics, 120, 455–456. Deave, T., & Johnson, D. (2008). The transition to parenthood: What does it mean for fathers? Journal of Advanced Nursing, 63, 626–633. Donohue, P. K., Hussey-Gardner, B., Sulpar, L. J., Fox, R., & Aucott, S. W. (2009). Parents' perception of the back-transport of very-low-birth-
7 weight infants to community hospitals. Journal of Perinatology, 29, 575–581. Fegran, L. (2009). Parents and nurses in a neonatal intensive care unit: the development of a mutual beneficial partnership in the care of the infant (Doctoral dissertation). Oslo: Oslo University. Fegran, L., & Helseth, S. (2009). The parent-nurse relationship in the neonatal intensive care unit context – closeness and emotional involvement. Scandinavian Journal of Caring Sciences, 23, 667–673. Fegran, L., Helseth, S., & Fagermoen, M. F. (2008). A comparison of mothers' and fathers' experiences of the attachment process in a neonatal intensive care unit. Journal of Clinical Nursing, 17, 810–816. Fowlie, P. W., Booth, P., & Skeoch, C. H. (2004). Moving the preterm infant. British Medical Journal, 329, 904–906. Fowlie, P. W., & McHaffie, H. (2004). Supporting parents in the neonatal unit. British Medical Journal, 329, 1336–1338. Gibbins, S. A. M., & Chapman, J. S. (1996). Holding on: Parents' perceptions of premature infants' transfers. JOGGN, 25, 147–153. Graneheim, U. H., & Lundman, B. (2004). Qualitative content analysis in nursing research: Concepts, procedures and measures to achieve trustworthiness. Nurse Education Today, 24, 105–112. Hall, E. O. C. (2005). Danish parents' experiences when their newborn og critically ill small child is transferred to the PICU – a qualitative study. British Association of Critical Nurses, Nursing in Critical Care, 10, 90–97. Hanrahan, K., Gates, M., Attar, M. A., Lang, S. W., Frohna, A., & Clark, S. J. (2007). Neonatal back transport: Perspectives from parents of Medicaid-insured infants and providers. Neonatal Network, 26, 301–311. Hollywood, M., & Hollywood, E. (2011). The lived experiences of fathers of a premature baby on a neonatal intensive care unit. Journal of Neonatal Nursing, 17, 32–40. Jackson, K. (2006). Att vara förälder till ett för tidigt barn - en prospektiv studie om upplevelsen av föräldraskap och möten med vården. (Parenting a prematurely born child: A prospective study of the experiences of parenthood and interaction with health care professionals. (Doctoral dissertation). Örebro: Örebro University. Jackson, K., Ternestedt, B. -M., & Schollin, J. (2003). From alienation to familiarity: Experiences of mothers and fathers of preterm infants. Journal of Advanced Nursing, 43, 120–129. Kaaresen, P. I., Rønning, J. A., Ulvund, S. E., & Dahl, L. B. (2006). A randomized controlled trial of the effectiveness of an early-intervention program in reducing parenting stress after preterm birth. Pediatrics, 118, e9–e19. Kvale, S., & Brinkmann, S. (2009). Det kvalitative forskningsintervju. (InterView: Learning the craft of qualitative research interviewing). Oslo: Gyldendal Akademisk. Lindberg, B., & Öhrling, K. (2008). Experiences of having a prematurely born infant from the perspective of mothers in northern Sweden. International Journal of Circumpolar Health, 67, 461–471. Meleis, A. I. (2010). Transitions theory. Middle-range and situation-specific theories in nursing research and practice. New York: Springer publishing company. Mercer, R. T. (2004). Becoming a mother versus maternal role attainment. Nursing Scholarship, 36, 226–232. Mohamed, M. A., & Alv, H. (2010). Transport of premature infants is associated with increased risk for intraventricular haemorrhage. Archives of disease in childhood. Fetal and Neonatal Edition, 95, F403–F407. Mueller-Nix, C., Forcada-Guex, M., Pierrehumbert, B., Jaunin, L., & Borgini, F. A. (2004). Prematurity, maternal stress and mother-child interactions. Early Human Development, 79, 145–158. Obeidat, H. M., Bond, E. A., & Callister, L. C. (2009). The parental experience of having an infant in the newborn intensive care unit. The Journal of Perinatal Education, 18, 23–29. Peitersen, B., Arrøe, M., & Pryds, O. (2008). Neonatalogi. Århus: Nyt Nordisk Forlag Arnold Busck.
8 Rojas, M. A., Shirley, K., & Rush, M. G. (2011). Perinatal transport and levels of care. In G. B. Merenstein, & L. Gardner (Eds.), Handbook of neonatal care (7th ed.). St.Louis, Missouri: Mosby Elsevier. Rowe, J., & Jones, L. (2008). Facilitating transitions. Nursing support for parents during the transfer of preterm infants between neonatal nurseries. Journal of Clinical Nursing, 17, 782–789. Schumacher, K. L., & Meleis, A. I. (1994). Transition: A central concept in nursing. Journal of Nursing Scholarship, 26, 119–127. Senthilkumar, R., Corpuz, N., Ratnavel, N., Sinha, A., & Mohinuddin, S. (2011). Adverse events during emergency transfer of neonates performed by regionalized dedicated transfer service. Archives of Disease in Childhood, 96, a91. Shaw, R. J., Bernard, R. S., Deblois, T., Ikuta, M. N., Ginzburg, K., & Koopman, C. (2009). The relationship between acute stress disorder and posttraumatic stress disorder in the neonatal intensive care unit. Psychosomatics, 50, 131–137. Shin, H., & White-Trout, R. (2007). The conceptual structure of transition to motherhood in the neonatal intensive care unit. Journal of Advanced Nursing, 58, 90–98. Siegel, R., Gardner, S. L., & Dickey, L. A. (2011). Families in crisis: Theoretical considerations. In G. B. Merenstein, & L. Gardner (Eds.),
M.D. Granrud et al. Handbook of neonatal care (7th ed.). St.Louis, Missouri: Mosby Elsevier. Singer, L. T., Salvator, A., Guo, S., Collin, M., Lilien, L., & Baley, J. (1999). Maternal psychological distress and parenting stress after the birth of a very low-birth-weight infant. JAMA, 281, 799–805. Tandberg, B. S., & Steinnes, S. (2009). Nyfødtsykepleie 1 - syke nyfødte og premature barn. (Newborn nursing 1 - ill neonates and premature infants). Otta: Cappelen Damm AS. Tandberg, B. S., Pettersen, S. H., Vårdal, M., & Rönnestad, A. (2013). Parents of preterm evaluation of stress and nursing support. Journal of Neonatal Nursing, 19, 317–326. Turan, T., Basbakkal, Z., & Özbek, S. (2008). Effect of nursing interventions on stressors of parents of premature infants in neonatal intensive care unit. Journal of Clinical Nursing, 17, 2856–2866. van den Berg, J., & Lindh, V. (2011). Back transport of infants to community hospitals: 12 years' experience of an intervention to prepare parents for their infants' transfer from neonatal intensive care to community hospital. Journal of Neonatal Nursing, 17, 116–125. Ward, F. R. (2010). Parents' views of involvement in concurrent research with their neonates. Journal of Empirical Research on Human Research Ethics, 5, 47–55.
Parents' Experiences of Their Premature Infants' Transportation From A University Hospital NICU to NICU at Two Local Hospitals Marie Dahlen Granrud RN, MSc a,b , Elin Ludvigsen RN, MSc b , Birgitta Andershed RNT, PhD c,⁎ a
Department of Nursing, Hedmark University College, Elverum, Norway Neonatal Intensive Care Unit, Innlandet Hospital Trust, Norway c Department of Nursing, Gjøvik University College, Norway, and Department of Palliative Research Centre, Ersta Sköndal University College and Ersta Hospital, Stockholm, Sweden b
Received 22 April 2013; revised 23 January 2014; accepted 24 January 2014
Key words: Premature; Parents; Transition; Transportation; Experience
The aim of this study was to describe how the parents of premature infants experience the transportation of their baby from the neonatal intensive care unit at a university hospital (NICU-U) to such a unit at a local hospital (NICU-L). This descriptive qualitative study comprises interviews with nine sets of parents and two mothers. The qualitative content analysis resulted in one theme: living in uncertainty about whether the baby will survive, and three categories: being distanced from the baby; fearing that something would happen to the baby during transportation; and experiencing closeness to the baby. The results also revealed that the parents experienced developmental, situational and health– illness transitions. © 2014 Elsevier Inc. All rights reserved.
A PREMATURE BABY presents a challenge for the majority of parents, who are plunged into a reality for which they are unprepared. They may therefore be in a vulnerable situation and feel both disappointed and guilty about failure to achieve a full-term pregnancy (Shin & White-Trout, 2007) as well as fearing that their baby will die. Being unprepared for the premature birth may make it difficult for them to feel like parents (Lindberg & Öhrling, 2008). Many expectant parents prepare themselves for a fully developed infant and grieve over the lost ‘dream baby’, which may hinder the attachment between parents and child (Tandberg & Steinnes, 2009). In addition, the bonding may be negatively affected by the parents' stay in a technologically intensive clinical
⁎ Corresponding author: Birgitta Andershed, RNT, PhD. E-mail address: [email protected]. 0882-5963/$ – see front matter © 2014 Elsevier Inc. All rights reserved. http://dx.doi.org/10.1016/j.pedn.2014.01.014
environment where they observe their child's struggle to survive. As a result, such parents often experience more stress and anxiety than those of full-term infants (Aagaard & Hall, 2008; Kaaresen, Rønning, Ulvund, & Dahl, 2006; Tandberg, Pettersen, Vårdal, & Rönnestad, 2013; Turan, Basbakkal, & Özbek, 2008). Being the parent of a premature infant involves transitions that differ from those of parents with a healthy, full-term baby. These transitions often occur simultaneously within a fairly short period. Schumacher and Meleis (1994) described three common types of transition: developmental, situational and health–illness. A situational transition is the transportation of the infant from the neonatal intensive care unit to a local hospital (Fowlie, Booth, & Skeoch, 2004). This can entail a risk, for example cerebral haemorrhage (Mohamed & Alv, 2010). Parents often fear that their child will not tolerate the transfer and that it will cause her/his condition to deteriorate.
2 The parents also worry that the local hospital does not possess the necessary expertise (Hall, 2005). Studies have found that parents would like the infant to be closer to home but are anxious and troubled about the unknown (Donohue, Hussey-Gardner, Sulpar, Fox, & Aucott, 2009; Hall, 2005). Communication at an early stage prior to transportation combined with good preparation of the parents can improve their experience (Hall, 2005; Hanrahan et al., 2007; Rowe & Jones, 2008). Ensuring contact with healthcare professionals from the local hospital while the baby is still at the university hospital is described as important for the parents (van den Berg & Lindh, 2011). In addition, it is vital that the healthcare professionals who accompany the baby in the road ambulance are highly experienced (Peitersen, Arrøe, & Pryds, 2008). Although premature infants are often transported in road ambulances between neonatal care units and hospitals, few studies describe the parents' experiences. This study was motivated by the lack of research describing how parents experience the transportation of their premature infant and what this separation can entail. Another reason is the authors' long experience of transfers by road ambulance leading to challenges for new families. It is therefore important to deepen our knowledge and increase understanding of the parents' situation. Consequently, the aim of this study was to describe how the parents of premature infants experience the transportation of their baby from the neonatal intensive care unit at a university hospital (NICU-U) to such a unit at a local hospital (NICU-L).
M.D. Granrud et al. The infants, some of whom were multiple-birth siblings, were born in weeks 26 + 0–32 + 0 (median 28 weeks) of the gestation period.
Context The NICU-U in the study is a high-tech medical care unit for babies born as early as gestational week 23 + 0. This means that it treats many extremely premature infants and employs a great deal of advanced technology. The babies are underdeveloped and often very ill. When their health status is sufficiently stable, they are transferred to NICU-L where they remain hospitalised for periods ranging from weeks to months. The NICU-L treats babies from gestational week 28 + 0 and upwards and is also characterised by advanced technology although to a lesser extent than the NICU-U. The parents in the study had a premature baby who was born at the NICU-U where it remained for a period ranging from several days to a few months, after which it was transferred to the NICU-L at one of two local hospitals. On transfer the infants were at different gestational ages, and their medical condition varied, but in general they had less need of advanced monitoring. The transportation took place by road ambulance, and the infant was placed in a transport incubator. A nurse and a pediatrician from the NICU-L accompanied the baby during transportation, which took between 2 and 3 hours.
Data Collection Design and Method This descriptive qualitative study comprises qualitative interviews analysed by means of content analysis (Graneheim & Lundman, 2004).
Participants From April to June, 2011, seven sets of parents were consecutively selected at two neonatal intensive care units at two different local hospitals. The interviews took place at the local hospitals and were conducted by MG and EL as close to the discharge date as possible. Additional four sets of parents were chosen retrospectively due to the lack of premature babies during the period. These interviews were held at the parents' home 3–8 months after discharge. The inclusion criteria were parents of a premature baby born at a university hospital and transferred to a local hospital and ability to speak Norwegian. The exclusion criterion was prior experiences of pre-term delivery. Two fathers declined to participate, thus 11 mothers (22–40 years, median 28) and nine fathers (23–40 years, median 32) took part in the study.
Qualitative interviews (Kvale & Brinkmann, 2009) were conducted with both parents simultaneously. As the mother and the father might have a different focus and reactions after a premature birth (Fegran, 2009; Jackson, 2006), it was decided to interview them together so that they could complement each other in order to elicit variations in their experience. In view of the fact that two fathers declined to participate, two interviews were conducted with only the mother present. Two of the authors conducted the interviews. The opening question was: “Can you please tell us about your experiences of your child's transfer to the local hospital?” An interview guide was used to cover specific areas of the parents' experiences before, during and after the transfer of the infant. Probing questions (e.g. Can you describe that more clearly? and How did you feel?) were posed to obtain a deeper understanding, and the parents were encouraged to speak freely about their experiences. Three of the interviews took place in the home of the parents, and the others were carried out in the respective care units at the local hospital. The infant was present during four of the interviews, which at times created some disturbance. The interviews, each of which lasted for about 1 hour, were audiotaped and later transcribed verbatim.
Parent's Experiences
Data Analysis The interviews were analysed using inductive qualitative content analysis, which can vary in depth and level of abstraction (Graneheim & Lundman, 2004). The analysis commenced by reading the transcribed interviews several times to acquire an overall understanding. Thereafter, the text was sorted into the following three content areas: before, during and after the transfer of the infant. The text in the content areas was then divided into abstracted meaning units in line with the aim of the study. Each meaning unit was condensed and labelled with a code to the key message embedded in the text. The codes were manually analysed and compared for each set of parents as well as between sets, and for the parents' experiences before, during and after the transfer. Various sub-categories emerged from the codes, and these were compiled in a matrix. Those that belonged together were grouped into categories. During the analysis, patterns in the parents' experiences were continuously sought. Three categories and nine sub-categories were formulated. Finally, a theme emerged in which the latent content of the parents' experiences became visible (Table 1). During the analysis the authors continuously discussed the process. When disagreement arose, the discussion continued until consensus was achieved. Several quotations from the interviews are presented to illustrate the content of the categories.
Ethics The parents received both oral and written information about the study. They were informed that participation was voluntary, that they could withdraw at any time without giving a reason and that this would in no way affect the treatment of their baby. An application was submitted to the regional committees for medical and health research for permission to conduct the project, which they assessed Table 1
Overview of the theme, categories and subcategories.
Living in uncertainty about whether the baby will survive Being distanced from the baby - A sense of not owning the baby - A lack of information - Relating to many people Fearing that something would happen to the baby during transportation - A sense of separation - Wanting to be in the ambulance - Safety of the infant Experiencing closeness to the baby - Increased accessibility - Having to relate to fewer people - Closer to home
3 as being exempt from the need for approval. The project was authorized by the data protection officer at Oslo University Hospital.
Findings The results led to a main theme: Living in uncertainty about whether the baby will survive. The parents described the premature birth as unexpected, difficult and chaotic. They expressed anxiety that something could happen to their baby or that she/he would die. They wanted confirmation that all would be well, but no one could give them such assurance. A mother described it in the following way: “No one could promise us that it would be all right. I understand that they can't do that, but it was very hard not being able to obtain reassurance that things would go well.” The parents experienced the environment at the neonatal intensive care units as frightening, in addition to the fact that their infant was totally dependent on advanced technical equipment. They described many overwhelming impressions and alarming situations that made it almost impossible to be close to their child. They found it difficult to comprehend that the tiny, critically ill infant in the incubator belonged to them. Their fear and insecurity is illustrated by the following statement: “I found it really terrifying to go through that door – I never knew what I would find.” Anxiety about something happening to the baby was strong and continued throughout the entire hospital stay. The main theme Living in uncertainty about whether the baby will survive consisted of the following categories: (1) being distanced from the baby, (2) fearing that something would happen to the baby during transportation, and (3) experiencing closeness to the baby. The theme, categories and sub-categories are presented in Table 1.
Being Distanced From the Baby The parents experienced physical and mental distance from the baby while it was in the NICU-U. Several reported that they needed help and support to enter into physical contact with her/him. Some sets of parents felt that their child belonged to the hospital. One mother said: “Everything belonged to them and in a way I felt as if the baby belonged to the hospital as well.” The parents expressed a sense of not owning the baby. One father said: “I felt that they decided when we could do things – yes, they really did. It was as if they decided over our heads a bit.” Several of the parents found it difficult that the nurses told them what to do and that the nurses had the main responsibility for the care. The parents also considered that they were not included enough in the care and nursing of their child. Several mothers commented: “It took a long time for me to realise that it was my child.”
4
M.D. Granrud et al.
Parents experienced a lack of information concerning their child's health. The majority had few or no consultations with a doctor at the NICU-U. Many parents felt a need to be present during the physician's rounds and to ask her/him about their child – something they were not allowed to do. As one mother said: I don't care what the doctor says about other children, I just care about my own child. I wanted to know what the doctor had to say. I wasn't allowed to and that was a pity.
Some sets of parents felt that the decision about whether their baby was well enough to be transferred varied from doctor to doctor. Apart from one set of parents, they received no information about the care unit to which the child was to be transferred, and this was experienced as a shortcoming. Most of the parents held the view that relating to many people at the NICU-U was challenging. One father said: “There were different nurses every day and you had to repeat everything each time. I've never shaken hands with so many people before.” The parents felt that there was a multitude of different nurses. A large number of staff members inevitably mean that different advice will be given. One mother commented: It (the NICU-U) was big and very complex… In the course of 16 days, I counted that I'd spoken to 16 different nurses, midwives and children's nurses about breastfeeding. And when I talked to the sixteenth person on the sixteenth day who gave me the sixteenth piece of advice about how to get started – well, I just lost it completely in the lactation room.
Having to relate to so many people contributed to the parents' feeling of distance from their child. Moreover, it was difficult for new staff members to pay attention to the parents' experiences when first encountering the baby.
Fearing That Something Would Happen to the Baby During Transportation Most parents were present when their child was collected by ambulance for transfer to the local hospital. They were worried about whether the infant would tolerate the journey and described their fear that something would happen. One father related with tears in his eyes: I was nervous as I thought it was a bit too soon for our little girl to make such a journey. I really believed that. I wasn't afraid of … there was a doctor there naturally, but it was the drive itself I was worried about. I wondered a bit about whether she would be able to cope with the driver slamming on the brakes.
One mother was concerned about the fact that when she was breastfeeding at the NICU-U she had been told to sit as quietly as possible to reduce stress in the baby. Consequent-
ly, she found it difficult to accept that the infant was to be transferred by ambulance and said: “So he was going to lie in a vehicle where he would be tossed around in all directions. I think that was a bit frightening. That's what I was most worried about. And the fact that he was so tiny.” Several of the parents mentioned the risk of cerebral hemorrhage. One mother stated: “I thought about this cerebral haemorrhage business then; they are still quite small.” The father continued: “Maybe they're too small to cope with it?” Both mothers and fathers were afraid of losing control over the child and experienced a sense of separation. They found the separation during the transportation difficult. One mother mentioned that the transfer was frightening because she could not see what was happening. Another said the fact that an unfamiliar nurse came and took the baby away was difficult. Others felt that it was distressing to send the baby away while they themselves remained at the university hospital. One mother related: The accompanying doctor and nurse know what they're doing. It's not the first time they have done it but it's the first time they have collected my child. They've never held my baby before – all infants are different. So it was very scary. I kept thinking ‘Where are you now…. where are you now…. what are you doing now?’
Several of the parents expressed wanting to be in the ambulance during the transfer. One father who very much wanted to do so was told that there was no room. He said: “It seemed a bit odd. They placed both girls in the incubator and there were three ambulance personnel and one nurse from here. They explained as best they could that there wasn't room.” One set of parents was informed at an early stage that they could not accompany their baby in the ambulance. They said: “We could well understand that because if anything happened, there was no one to take care of us.” One father had googled on transportation and discovered that there had been a great deal of discussion about the transportation of premature infants and that it should preferably take place by helicopter. Another father stood and watched his child being placed in the transport incubator. He wondered about the safety of the infant in the ambulance and whether it was secured in the incubator. His child was lying in a ‘nest’ of diapers and blankets and he asked: “Shouldn't the baby be better secured?” Another father said: “Goodness, he's not very well secured if anything should happen.” The parents were happy when they got the message that their children had arrived safely at the local hospital and one father said: “We sighed with relief and said thank goodness, now they've arrived safely.” Other parents said that as long as they did not hear anything, everything was fine.
Experiencing Closeness to the Baby The parents described that they developed a more intense awareness of having a baby after it had arrived at the local
Parent's Experiences hospital. They perceived their child as being more accessible if they could visit whenever they wanted. However, some of the parents mentioned that the baby became unstable and did poorly after transportation. These parents nevertheless described increased accessibility despite the baby's more unstable condition. They were surprised about their child's deterioration, as they had not received information about it beforehand. However, other parents had received such information and according to one mother: They said he might become stressed. And be very, very tired for perhaps two or three days. That he might lose weight and be listless and so on. So I was very well prepared for this, but it didn't happen. And I was delighted.
Several also said that they had a greater sense of belonging with their child when she/he was removed from the incubator and placed in a cot. One mother said: “It was only when he was put in a cot that I started to feel that he was actually mine.” Several parents were unsure about whether the expertise at the local hospitals was equally good as at the university hospital. However, most of them considered it a relief to come to a smaller care unit, which meant having to relate to fewer people. For the parents it was important to have a personal contact person among the nurses. The parents were happy that they had come closer to home as well as to their family and friends, especially parents who had older children. One mother said: “It was lovely to be close to my family. I was given my own hotel room even though I intended to sleep at home. I felt I was made very welcome.”
Discussion The results of this study highlight the fact that parents feared that something might happen to their child and that he/ she could die. The entire transfer process was overshadowed by uncertainty, as most neonatal deaths are due to prematurity (Siegel, Gardner, & Dickey, 2011). The parents described feelings such as fear, uncertainty and chaos. This is in agreement with previous studies of reactions to premature birth (Aagaard & Hall, 2008; Jackson, 2006; Mueller-Nix, Forcada-Guex, Pierrehumbert, Jaunin, & Borgini, 2004; Singer et al., 1999; Turan et al., 2008). The sense that it was not their own child was particularly strong and reinforced by the fact that the baby was in an incubator surrounded by a great deal of monitoring equipment. Several parents dreaded entering the NICU-U, as they were afraid of what they might encounter, which is in agreement with other studies (Aagaard & Hall, 2008; Arockiasamy, Holsti, & Albersheim, 2008; Fowlie & McHaffie, 2004; Kaaresen et al., 2006; Shaw et al., 2009; Turan et al., 2008). As the high-tech neonatal intensive care
5 unit environment may seem frightening to parents, it is crucial that nurses reflect on and are familiar with this situation (Fegran, Helseth, & Fagermoen, 2008). The parents in our study felt as if the hospital “owned” their child and that they had to ask for permission to have physical contact with her/him (cf. Aagaard & Hall, 2008; Lindberg & Öhrling, 2008). The nurses' approach is crucial for the parents' perception of their healthcare encounters at a difficult time. Studies indicate that they have both positive and negative experiences of the encounter with the nurses, which affects how they feel (Fowlie & McHaffie, 2004; Hall, 2005). The parents considered it important that nurses treat the whole family with compassion and respect during the crisis caused by the transition (Hanrahan, Gates, Attar, Lang, Frohna, & Clark, 2007). The parents were of the opinion that they had received too little information in the NICU-U. Studies reveal that such parents have a great need for understandable information that is adapted to their situation (Fowlie & McHaffie, 2004; Ward, 2010). After a premature birth they may be in a state of acute crisis, making it difficult to absorb information (Lindberg & Öhrling, 2008). It may well be that the parents in our study were given information but failed to understand it. Donohue et al. (2009) reported that parents find it easier to communicate with nurses and that they receive more attention from nurses than from doctors. Our results highlight the fact that parents wanted more information from doctors about their child's health status. Moreover, there was a lack of information about the care unit to which the infant was to be transferred. Regarding the fear that something could happen to their child during the actual transportation, it emerged that the mothers were more concerned about the separation than the fathers, who were more worried about the transportation itself, such as how the baby would be secured (cf. Donohue et al., 2009; Gibbins & Chapman, 1996), whether she/he could tolerate the slamming on of brakes and about the equipment used. There is an ongoing debate about how to secure premature infants during transportation, which was mentioned by one of the fathers in the study. Studies have established that transport per se poses a risk to the premature infant (Attar & Bratton, 2007; Donohue et al., 2009; Hall, 2005; Mohamed & Alv, 2010; Senthilkumar, Corpuz, Ratnavel, Sinha, & Mohinuddin, 2011). However, research in this area is sparse, and there is a lack of both national and international guidelines. While on the one hand transportation is associated with a risk of something happening to the infant, it is also seen as a positive and joyful step (Hall, 2005). Some of the parents felt relieved that their child was well enough to be transferred while others wanted the child to remain at the university hospital for a longer period. One of the changes experienced at the local hospital was that there were fewer nurses to relate to, which was described as positive by the parents, because it allowed them to get to know the nurses better. This differs from a study (Hanrahan et al., 2007) reporting that parents experience stress in a hospital where there are fewer nurses with responsibility for
6 the baby as they may worry that the child will not receive the necessary care. The transfer means that the family is closer to home, which was important for those who had older children. When a premature infant is admitted to the NICU-L the whole family is involved, including siblings. The brothers and sisters make preparations and are often just as happy about the new family member as their parents, which makes the family situation less tense. The study reveals that the parents' feelings for the baby become stronger after transfer to the local hospital. This may be because their child is more stable, has grown and been moved from an incubator to a cot. As her/his condition stabilises, the parents gradually assume more responsibility (Fegran, 2009). The entire period – from having a sick, premature infant at the NICU-U, its transportation to the local hospital up to the time when the baby gains a little weight and its health improves – reveals that parents and their child undergo different transitions in a short space of time (cf. Meleis, 2010; Schumacher & Meleis, 1994). The parents not only have to undergo a development transition to parenthood but also situational and health–illness transitions, which are intertwined. According to Shin & White-Traut (2007, p. 94), “the time when the infant can be discharged from the NICU” and “the time when the infant can be removed from the incubator” are two important turning points for personal development (cf. Jackson, Ternestedt, & Schollin, 2003). This corresponds well with the results of our study in which parents described experiencing a greater sense of belonging with their child when they arrived at the NICU-L and she/he was moved from the incubator to a cot. These turning points can be compared with a health–illness transition. The parents feel worried, anxious and afraid due to their child's critical situation as well as uncertainty about whether she/he will survive. In addition, they experience stress and helplessness when standing beside their child and being unable to do anything to support her/him. Being an onlooker when one's own child is suffering from serious symptoms can in itself lead to suffering. It is likely that the parents' state of health corresponds with their child's health–illness transition; when the child is poorly the parents are poorly, and when the child is a little better, the parents also feel a little better. They are thus intertwined with their child and dependent on her/his condition. The transfer from the NICU-U to the NICU-L by road ambulance can also be seen as a situational transition. The parents in our study experienced worry and fear about the transfer and the safety of their child. In particular, the mothers felt that they had lost control over the situation (cf. Arockiasamy et al., 2008; Obeidat, Bond & Callister, 2009). The separation between the parents and their child may affect the bond between parent and child as well as the development of their identity (Rojas, Shirley, & Rush, 2011). The mother's development transition is often described as becoming a mother (Jackson, 2006), on which several studies have focused (Mercer, 2004; Shin & White-Trout,
M.D. Granrud et al. 2007). There are fewer descriptions of becoming a father. However, Deave & Johnson (2008) described the father's responsibility, overwhelming feelings and confusion in the first few weeks after the birth. The father can be an outsider in the critical situation that arises in relation to the rapid and unexpected birth of a premature infant (Hollywood & Hollywood, 2011; Jackson et al., 2003). The lack of opportunity to make contact with the baby can result in delayed parenthood for both parents. It is important for nurses to help and support families to achieve healthy transitions. Schumacher & Meleis (1994) described subjective well-being, role mastery and positive relationships as indicators of healthy transitions. Therefore it is important that the parents are well prepared for the transportation. van den Berg & Lindh (2011) stated that healthcare professionals at the two hospitals involved are responsible for arranging the transportation. They added that parents need up-to-date information and personal communication with nurses at the NICU-U as well as the NICU-L prior to transportation. It is essential that the family is given the opportunity to establish a trusting relationship with a primary nurse (contact person) from the NICU-L as soon as possible (Fegran & Helseth, 2009). Well-prepared parents seemed to have a better experience of the transport and the new care unit than those who were unprepared (van den Berg & Lindh, 2011). The mother in our study who described how her child would be transported by people who had not previously seen or touched the infant had a frightening experience. Her distress and anxiety might have been reduced if the family had met the nurse beforehand, thus enabling the latter to create a trusting relationship.
Credibility The participants consisted of eleven sets of parents – six from one local hospital and five from the other. In four cases it was necessary to obtain the required number of participants 8 months retrospectively. Nevertheless, the parents obtained retrospectively could recall the details of their child's transfer, which may be due to the strong impact of these experiences. The participants varied in terms of sex, age, education, multiple births and whether or not they had older children. This variation in experiences can strengthen the credibility of the study and also increase transferability (Graneheim & Lundman, 2004) to other parents and similar contexts. However, we cannot guarantee saturation of the data, as the baby–mother–father triad can differ greatly depending on how the delivery was experienced, the infant's condition and the situation of both the mother and the father. Though interviews with both parents yielded very important information, conducting interviews with both mothers and fathers impacted the ability to achieve saturation of data and
Parent's Experiences also the transferability of the findings, as such can be viewed as a weakness of the study. A strength of the study is that a joint interview was conducted with each set of parents, which can provide variation in the data material. One parent often confirmed what the other parent said by a short comment or a nod. However, a weakness is that their individual narrative may have been influenced by that of their partner. Nevertheless, the interviews contained rich content, and both mothers and fathers were actively involved in the dialogues. A strength of the analysis was that all authors participated both individually and together (Graneheim & Lundman, 2004), leading to creative and reflective discussions throughout the analysis process.
Conclusion The study resulted in a deeper understanding of the parents' situation and the challenges they face in the transition from the university hospital to the local hospital. They had difficulty adapting to the parental role and relating to the transfer of their child to another hospital. Uncertainty proved to be the strongest emotion during the entire process. This uncertainty was primarily grounded in the fear that their child would not survive. Parents also described uncertainty arising from the large number of nurses they had to relate to, especially at the NICU-U. They often received different information and advice that led to increased uncertainty and frustration. Parents need continuity of nursing staff, up-todate information and personal communication with nurses at the NICU-U as well as the NICU-L prior to transportation. Well-prepared parents seemed to have a more positive experience of the transport and the new care unit than those who were less well-prepared. The knowledge and experience provided by this study can serve to improve the continuity of nursing care as well as cooperation between university hospitals and local hospitals prior to transportation. It is hoped that this will lead to increased awareness among those who provide care to such parents and their children, thereby reducing the stress they experience.
References Aagaard, H., & Hall, E. O. C. (2008). Mothers' experiences of having a preterm infant in the neonatal care unit: A meta-synthesis. International Pediatric Nursing, 23, e26–e36. Arockiasamy, V., Holsti, L., & Albersheim, S. (2008). Fathers' experiences in the neonatal intensive care unit: A search for control. Pediatrics, 121, e215–e222. Attar, M. A., & Bratton, S. L. (2007). Effect of back transport on readmissions and follow-up care. Pediatrics, 120, 455–456. Deave, T., & Johnson, D. (2008). The transition to parenthood: What does it mean for fathers? Journal of Advanced Nursing, 63, 626–633. Donohue, P. K., Hussey-Gardner, B., Sulpar, L. J., Fox, R., & Aucott, S. W. (2009). Parents' perception of the back-transport of very-low-birth-
7 weight infants to community hospitals. Journal of Perinatology, 29, 575–581. Fegran, L. (2009). Parents and nurses in a neonatal intensive care unit: the development of a mutual beneficial partnership in the care of the infant (Doctoral dissertation). Oslo: Oslo University. Fegran, L., & Helseth, S. (2009). The parent-nurse relationship in the neonatal intensive care unit context – closeness and emotional involvement. Scandinavian Journal of Caring Sciences, 23, 667–673. Fegran, L., Helseth, S., & Fagermoen, M. F. (2008). A comparison of mothers' and fathers' experiences of the attachment process in a neonatal intensive care unit. Journal of Clinical Nursing, 17, 810–816. Fowlie, P. W., Booth, P., & Skeoch, C. H. (2004). Moving the preterm infant. British Medical Journal, 329, 904–906. Fowlie, P. W., & McHaffie, H. (2004). Supporting parents in the neonatal unit. British Medical Journal, 329, 1336–1338. Gibbins, S. A. M., & Chapman, J. S. (1996). Holding on: Parents' perceptions of premature infants' transfers. JOGGN, 25, 147–153. Graneheim, U. H., & Lundman, B. (2004). Qualitative content analysis in nursing research: Concepts, procedures and measures to achieve trustworthiness. Nurse Education Today, 24, 105–112. Hall, E. O. C. (2005). Danish parents' experiences when their newborn og critically ill small child is transferred to the PICU – a qualitative study. British Association of Critical Nurses, Nursing in Critical Care, 10, 90–97. Hanrahan, K., Gates, M., Attar, M. A., Lang, S. W., Frohna, A., & Clark, S. J. (2007). Neonatal back transport: Perspectives from parents of Medicaid-insured infants and providers. Neonatal Network, 26, 301–311. Hollywood, M., & Hollywood, E. (2011). The lived experiences of fathers of a premature baby on a neonatal intensive care unit. Journal of Neonatal Nursing, 17, 32–40. Jackson, K. (2006). Att vara förälder till ett för tidigt barn - en prospektiv studie om upplevelsen av föräldraskap och möten med vården. (Parenting a prematurely born child: A prospective study of the experiences of parenthood and interaction with health care professionals. (Doctoral dissertation). Örebro: Örebro University. Jackson, K., Ternestedt, B. -M., & Schollin, J. (2003). From alienation to familiarity: Experiences of mothers and fathers of preterm infants. Journal of Advanced Nursing, 43, 120–129. Kaaresen, P. I., Rønning, J. A., Ulvund, S. E., & Dahl, L. B. (2006). A randomized controlled trial of the effectiveness of an early-intervention program in reducing parenting stress after preterm birth. Pediatrics, 118, e9–e19. Kvale, S., & Brinkmann, S. (2009). Det kvalitative forskningsintervju. (InterView: Learning the craft of qualitative research interviewing). Oslo: Gyldendal Akademisk. Lindberg, B., & Öhrling, K. (2008). Experiences of having a prematurely born infant from the perspective of mothers in northern Sweden. International Journal of Circumpolar Health, 67, 461–471. Meleis, A. I. (2010). Transitions theory. Middle-range and situation-specific theories in nursing research and practice. New York: Springer publishing company. Mercer, R. T. (2004). Becoming a mother versus maternal role attainment. Nursing Scholarship, 36, 226–232. Mohamed, M. A., & Alv, H. (2010). Transport of premature infants is associated with increased risk for intraventricular haemorrhage. Archives of disease in childhood. Fetal and Neonatal Edition, 95, F403–F407. Mueller-Nix, C., Forcada-Guex, M., Pierrehumbert, B., Jaunin, L., & Borgini, F. A. (2004). Prematurity, maternal stress and mother-child interactions. Early Human Development, 79, 145–158. Obeidat, H. M., Bond, E. A., & Callister, L. C. (2009). The parental experience of having an infant in the newborn intensive care unit. The Journal of Perinatal Education, 18, 23–29. Peitersen, B., Arrøe, M., & Pryds, O. (2008). Neonatalogi. Århus: Nyt Nordisk Forlag Arnold Busck.
8 Rojas, M. A., Shirley, K., & Rush, M. G. (2011). Perinatal transport and levels of care. In G. B. Merenstein, & L. Gardner (Eds.), Handbook of neonatal care (7th ed.). St.Louis, Missouri: Mosby Elsevier. Rowe, J., & Jones, L. (2008). Facilitating transitions. Nursing support for parents during the transfer of preterm infants between neonatal nurseries. Journal of Clinical Nursing, 17, 782–789. Schumacher, K. L., & Meleis, A. I. (1994). Transition: A central concept in nursing. Journal of Nursing Scholarship, 26, 119–127. Senthilkumar, R., Corpuz, N., Ratnavel, N., Sinha, A., & Mohinuddin, S. (2011). Adverse events during emergency transfer of neonates performed by regionalized dedicated transfer service. Archives of Disease in Childhood, 96, a91. Shaw, R. J., Bernard, R. S., Deblois, T., Ikuta, M. N., Ginzburg, K., & Koopman, C. (2009). The relationship between acute stress disorder and posttraumatic stress disorder in the neonatal intensive care unit. Psychosomatics, 50, 131–137. Shin, H., & White-Trout, R. (2007). The conceptual structure of transition to motherhood in the neonatal intensive care unit. Journal of Advanced Nursing, 58, 90–98. Siegel, R., Gardner, S. L., & Dickey, L. A. (2011). Families in crisis: Theoretical considerations. In G. B. Merenstein, & L. Gardner (Eds.),
M.D. Granrud et al. Handbook of neonatal care (7th ed.). St.Louis, Missouri: Mosby Elsevier. Singer, L. T., Salvator, A., Guo, S., Collin, M., Lilien, L., & Baley, J. (1999). Maternal psychological distress and parenting stress after the birth of a very low-birth-weight infant. JAMA, 281, 799–805. Tandberg, B. S., & Steinnes, S. (2009). Nyfødtsykepleie 1 - syke nyfødte og premature barn. (Newborn nursing 1 - ill neonates and premature infants). Otta: Cappelen Damm AS. Tandberg, B. S., Pettersen, S. H., Vårdal, M., & Rönnestad, A. (2013). Parents of preterm evaluation of stress and nursing support. Journal of Neonatal Nursing, 19, 317–326. Turan, T., Basbakkal, Z., & Özbek, S. (2008). Effect of nursing interventions on stressors of parents of premature infants in neonatal intensive care unit. Journal of Clinical Nursing, 17, 2856–2866. van den Berg, J., & Lindh, V. (2011). Back transport of infants to community hospitals: 12 years' experience of an intervention to prepare parents for their infants' transfer from neonatal intensive care to community hospital. Journal of Neonatal Nursing, 17, 116–125. Ward, F. R. (2010). Parents' views of involvement in concurrent research with their neonates. Journal of Empirical Research on Human Research Ethics, 5, 47–55.
