Giving birth to a healthy baby is an exciting event for parents. However, the unexpected birth of a sick or preterm baby replaces excited emotions with anxiety and stress (Malakouti, Jabraeeli, Valizadeh, & Babapour, 2013). Babies born with any type of complications or prematurity usually require intensive medical interventions and specialized nursing care. Hospitalization of an infant in neonatal intensive care unit (NICU) is a stressful event for parents. Stress sources of having a preterm infant admitted to NICU include infant size and infant appearance, surrounding devices, treatment modalities, change in parental role, long-term separation, and adapting to the NICU environment. This environment is typically stressful, noisy, strange, and frightening for the parents because of the prevalent atmosphere of suffering and death (Malakouti et al., 2013; Ortenstrand et al., 2010).
Parents are not prepared for their infants to be admitted to NICUs. This means that parents hand over care of their infant and share the parenting of their newborn with nurses, doctors, and allied health professionals (Malakouti et al., 2013). Erlandsson and Fagerberg (2005) described the experiences of six Swedish mothers in caring and their health status while having their preterm or sick full-term baby in a co-care (rooming-in) neonatal unit. Erlandsson and Fagerberg found that the needs and feelings of mothers were not being able to be close to your baby, being seen, not being seen, being part of a functional team, and not being part of a functional team. The most commonly reported responses to alteration of the parenting role are inability to protect the infant from pain, inability to provide appropriate pain management, anxiety, helplessness, loss of control, fear, uncertainty, and worries about the premature infant’s outcomes (Obeidat, Bond, & Callister, 2009).
Low-birth-weight neonates are admitted to the NICU to receive care that is often necessary for their survival. According to statistics of the 2013) on Jordan, the percentage of newborns with low birth weight was 13%, and the neonatal mortality rate was 12% of the low-birth-rate neonates in 2012 (United Nations Children’s Emergency Fund, 2013).
Although many international studies on neonatal nursing have identified parental stress (Olshtain-Mann & Auslander, 2008), difficulties coping, support issues (Tran, Medhurst, & O’Connell, 2009), and the experiences of parents in having a preterm infant (Nyström & Axelsson, 2002), there has been lack of studies regarding the assessment of parental stress, social support, satisfaction, and nursing support in NICUs in the Jordanian context. In addition, there have been no qualitative studies conducted in Jordan describing the experiences of parents of neonates admitted to the NICU (Obeidat & Callister, 2012). Therefore, the objective of this study is to describe the lived experiences, the care-related needs, and the support systems of parents with neonates in the NICU.
A qualitative design using a phenomenological approach was used to explore the Jordanian parent’s lived experiences of having a neonate admitted to the NICU. Phenomenology seeks to understand the meaning of lived experience (van Manen, 1990). Furthermore, phenomenology aims to discover experience as it is lived and to offer an understanding of the internal meaning of the experience of an individual. Thus, this approach was selected as the most appropriate research methodology to achieve the objective of this study.
The participants were recruited from three NICUs of major governmental hospitals in Amman, Zarqa, and Irbid. Two of these are major teaching hospitals, and one is a private hospital. Participants were recruited until data reached saturation. Inclusion criteria were composed of parents with a sick or preterm infant who had been hospitalized for a minimum of 24 hours.
Approval to conduct this study was gained from both the institutional review board committee at the Hashemite University and the Ministry of Health (Jordan). The participants provided informed consent. The information and data collected from participants were kept confidential and were used for research purposes only. The members of the research team were the only people who dealt with the information provided by the participants.
Trained nurses working in the target NICUs recruited individuals who met the research criteria. These nurses contacted the participants by telephone, briefed them about the study, and informed them that their participation in the study would be voluntary and that they could withdraw at any time. Interview appointments were arranged with participants in a place in the hospital that was suitable for them. The interview started with the parents being asked to complete the informed consent form. More information about the study was also provided before the interviews. All interviews were audio recorded, then transcribed verbatim, and translated into the English language.
The process of data analysis requires that the researcher becomes immersed in the data to understand the phenomenon under investigation and thus preserve the uniqueness of each participant’s lived experience (Streubert & Carpenter, 2011). This involves listening to the verbal descriptions of participants and then reading and rereading the transcripts, listening to the interviews, and reflecting on the significant statements or descriptions within the participants’ narratives (Streubert & Carpenter, 2011).
Semistructured, in-depth, face-to-face interviews were conducted between April 2013 and August 2013 using a preprepared interview guide. Participants were encouraged to talk freely and to describe their experiences using their own words. Each interview lasted from 30 minutes to 1 hour and were all conducted by the main researcher. The main researcher determined the level of data saturation during the course of data collection. Ten participants were interviewed: eight mothers and two fathers. Only two couples chose to be interviewed together, whereas the rest of the interviews were conducted with the mothers only.
The method of data analysis was guided by van Manen (1990, pp. 30–31), which specified key six activities for researching lived experiences: (a) turning to a phenomenon that seriously interests us and commits us to the world, (b) investigating experience as we live it rather than as we conceptualize it, (c) reflecting on the essential themes that characterize the phenomenon, (d) describing the phenomenon through the act of writing and rewriting, (e) maintaining a strong and oriented pedagogical relation to the phenomenon, and (f) balancing the research context by considering the constituent parts as well as the whole.
Data were analyzed by the main researcher after careful transcription of the tape-recorded interviews. All of the transcripts were read carefully, and potential labels describing respective data segments were assigned. Categories and subcategories were generated based on the occurrence of recurrent words or phrases within the data sets. Data segments were cross-indexed with the original interview transcripts that were reread and checked against field notes to ascertain the contextual meaning of the data. Key categories and subcategories with their appropriate data segments were then organized in a meaningful sequence, reflecting the aim of the study. Four key themes emerged through this process, which were used to describe the participants’ experiences supported by verbatim examples. A summary of the data analysis with supporting verbatim examples was prepared by the researcher.
The trustworthiness of this study was verified using the framework of Lincoln and Guba (Streubert & Carpenter, 2011), which addresses the dimensions of credibility, dependability, confirmability, and transferability.
Credibility was maintained by applying the member-check method to some transcripts of the interviews. In this method, transcripts are returned to the participants with a request to revise any words or sentences that do not accurately reflect the participants’ meaning or intent. Conformability was achieved by interviewing participating mothers and fathers separately, who repeated and confirmed what had been learned from the other parent. Recurrent patterning and saturation were obvious and verified when the main themes, subthemes, and patterns through the interviews were found between the participating mothers and fathers from different NICUs at different hospitals. Furthermore, the duplications of similar ideas, feelings, and experiences of the participants verified that data saturation had been achieved. Transferability may be verified by conducting a similar study under the same conditions with other parents in other NICUs at other hospitals.
The study participants included eight mothers and two fathers. The main reason for the predominance of mothers in the sample is that fathers were at work during the period allotted for the interviews (daytime). Seven of the participating mothers were multiparous and had two children on average. Only one mother was primiparous. Five of the participating mothers were working mothers and on their maternal leave. Both fathers who participated in the study had their own business, which gave them the flexibility to be at the hospital for the interview. The educational backgrounds of participants included secondary level (n = 4), diploma (n = 1), bachelor’s degree (n = 3), and postgraduate (n = 2).
The main findings of this study were summarized into four main themes (Table 1) that reflected the lived experience of parents. These main themes are being shocked, worried, and anxious parents; influences on the experiences of parents and families of the baby’s admission to the NICU; parents’ needs and provisions from healthcare professionals; and parental emotions and satisfaction.
Theme 1: being shocked, worried, and anxious parents
All mothers and fathers in this study expressed being shocked, worried, and anxious when they learned of their neonates’ admission to the NICU and they paid their first visit to the unit. From their detailed description of their experience, both moments were unforgettable.
It was the most difficult moment in my life. When I woke up after giving birth, I looked at the faces of the people around me, I felt something wrong had happened with my daughter. Then I asked them about her. They said to pray for her and ask God to be with her. She was at the NICU at that moment. Really, I was shocked. (Mother 2)
One mother and her husband shared their in-depth feelings about their first visit to the NICU:
When I visited my son for the first time at the NICU, I was very anxious. I found him sleeping and breathing fast with an oxygen nasal cannula. I touched him and caught his hand then he opened his eyes and smiled, at that time I felt my heart was burning and I cried deeply. But he got worse. On the second day, he was hooked up to multiple lines and was on a respirator and sedated. At that time, I was really shocked. I could not recognize him. I cannot forget these moments. (Mother 4)
During my first visit to my son he was getting tired with his breathing. He was a bluish color and could not cry. The doctor decided to put him on a respirator and he told me to stay outside the unit. Then the doctor came and told me “pray for your son, he is in a difficult condition.” That news shocked me. (Father 4)
Theme 2: influences on the experiences of parents and families on their baby’s admission to the neonatal intensive care unit
Admission to the NICU influenced the whole family, not only the parents, and influenced daily lifestyle and activities. Most of the families described the atmosphere of the family as stressed and depressive for the whole family, as described below:
The admission of my daughter to the NICU was very difficult on the family. All family members were sad and they prayed for her to be discharged from the hospital and asked God to protect her. (Mother 5)
Furthermore, the feelings of the siblings were influenced by their parents. Siblings were sad or shocked or asked many questions about the missed new baby.
Regarding myself, my faith in God is huge, I accepted what was given for me from God, but my oldest son (4 years old) was waiting the new baby to come home, and my husband expected our baby to be handicapped. For me, I expected him to die. (Mother 3)
The presence of my son in the NICU affected all of us at home, my older daughters were constantly asking about their brother and asked when he would come back? (Mother 1)
Some parents did not go to work and stayed home to pray and visit their infants. They could not perform their normal daily routines.
Sadness was the feature of all members of the family. My husband did not go to his work, but was coming with me to visit our son 3 to 4 times daily, and during the night he was praying to God. We were unable to eat or drink. My daughter and my son at home were asking about their new brother daily and waiting for him to come back. (Mother 4)
The effect was also felt on the extended family. Some mothers were unable to carry out their household tasks such as preparing food or drinks for family members, washing clothes, and cleaning the house.
The presence of my son in the NICU affected my family and my in-laws were very sad, although they tried to support me. Our daily life changed. I was doing nothing…just calling the hospital to get updated information about my son. It was a depressive and sad environment. (Mother 1)
The admission of my son to the NICU was like a disaster. The week of his admission was a week of crying because I was discharged from the hospital without him. It was wintertime, so I could not visit him, and I could not do anything at home such as housework. He was my first baby. Both my husband and I were in a very bad way. (Mother 6)
Theme 3: parents’ expectations and needs of healthcare professionals
In terms of the third theme, the participants described their specific expectations or needs of the healthcare team—specifically from the nurses who were with their infants 24 hours a day. Our findings distinguished participants into two groups, giving this theme two distinct subthemes. The first subtheme described the needs of the parents whose infants were in governmental hospitals. The second subtheme described the needs of the parents whose infants were in private hospitals or teaching hospitals.
First subtheme: parents’ requirements of neonatal intensive care units in governmental hospitals:
Parents with infants in governmental hospitals expressed their needs in the following terms:
I expected the nurses to help me when I visited my son at the NICU after a cesarean section. I expected them to answer my questions, to give me information about my son, and to permit me to visit him. I wanted them to have a humanistic caring sense…especially when I lost my baby. (Mother 3)
Regarding the support that the healthcare team (nurses specifically) was expected to provide, there was a gap between the expectations of parents and what was actually delivered. The parents who did not get what they expected from the healthcare team were the same parents who felt that they had not been supported by this team.
The nurses did not support me at all. They were careless, negligent, and did not tell the truth. For me, my support system was my husband and my family. (Mother 3)
Second subtheme: parents’ requirements of neonatal intensive care units in nongovernmental hospitals:
Conversely, parents of infants in nongovernmental hospitals expressed expectations that differed significantly from their government-hospital peers and expressed their needs as something they went through and experienced, as one mother said:
I wanted reassurance from the nurses and doctors when I called them on the phone or when I visited my son. I wanted them to explain his case to me, and that was what I found. (Mother 1)
The healthcare team (physicians and nurses) was very kind and cooperative. They knew their role and they performed their job very well. I felt that the care I received was ideal. (Mother 4)
Furthermore, these parents found that their expectations of the healthcare team were similar to the support that they received.
The nurse supported and encouraged me to enter the unit because I was shocked when I visited my son for the first time. His breathing was fast and his chest was moving quickly, I cried and refused to go inside the unit again, but the nurse reassured me that he would be better and insisted that I visit again. (Mother 1)
The healthcare team was very supportive, both emotionally and physically. They explained every event that happened with my son to me and explained his progress or deterioration. I found out what I expected and, more than that, found ideal care and support for my son, myself, and my husband. (Mother 4)
Theme 4: parental emotions and satisfaction
The fourth theme consists of two subthemes. The first describes the feelings of participating mothers and fathers according to their infant’s conditions at the time of admission to the NICU. The second describes the satisfaction of participating mothers and fathers with the overall healthcare process in the NICUs.
First subtheme: feeling hopeful versus feeling hopeless:
The first subtheme describes the participants’ sense of hopefulness or hopelessness in relation to their infants’ condition and the progression or deterioration of this sense during their admission to NICU. Feelings of hopefulness were associated with the progress of the infant’s health status. Hopelessness was associated with the deterioration of the infant’s health status or death.
For me, the most important thing was to disconnect the respirator, which meant that my son was progressing. One day, my son removed the tube from his nose with his own movements and continued breathing on his own. That day was the happiest day for me. Later, if I visited my son, and the nurses and physician told me that he was getting better. It made me optimistic and happy, then I would sleep very well that night. But, if they told me that there was minimal deterioration, I would feel depressed and hopeless. (Mother 4)
Similarly, a mother of an infant whose condition had gotten better expressed her extreme happiness at her child’s improved condition. She said:
I was really, really delighted when I knew that my son had progressed. After my depression I became very hopeful, but I felt the time was too long when the doctor said that there would still be another 2 or 3 days until my son would be at home. (Mother 1)
On the other hand, parents of infants whose conditions had deteriorated badly or had died expressed feelings of hopelessness.
I was crying and feeling desperate when I knew that my son had deteriorated, he was connected to respirator because his breathing was not effective. (Mother 6)
Second subtheme: satisfied versus dissatisfied parents:
Participants with infants in government and private or teaching hospitals had similar levels of satisfaction with the caring process. This means that, regardless of whether their needs were met or whether they received adequate support, participants still expressed satisfaction with the healthcare process. Even parents whose infants died were satisfied, with the exception of one couple who had lost their infant and expressed their dissatisfaction and extreme disappointment with the healthcare team in the NICU. This finding implies that, in light of the low level of needs satisfaction found in this study, the level of participant satisfaction would have been even higher if their needs had been met.
I’m satisfied. The nurses were good. They helped me, explained my son’s conditions, his status, and what they were doing with him. (Mother 1)
In the hospital, the doctors in the unit were clear and answered my questions when I asked them anything about my baby. However, the nurses were not helpful. I was not satisfied with their care. I did not deal with them directly. They answered my questions using their hand movements through the glass wall. The worst thing is to visit your baby for five minutes and see him only through a glass wall. (Mother 7)
This study aimed to describe the lived experiences, needs in relation to care, and support systems of parents whose neonates were admitted to the NICU. The first time the parents learned about their infants’ admission and their first visit to the NICU were shocking and unforgettable events for them. Furthermore, the findings of this study show that the mothers of infants who were admitted to the NICU all faced situations that were full of stress, anxiety, and unhappiness about the condition of their infants and that they were concerned for their infants’ health and life (Hutchinson, Spillett, & Cronin, 2012; Lindberg & Ohrling, 2008; Obeidat et al., 2009; Obeidat & Callister, 2012). All of the mothers in this study described their shock because they had not expected their infants to be NICU patients or to be less than “normal” at birth (Lindberg & Ohrling, 2008). However, it was very important that the mothers visited their infants in the NICU after giving birth to better understand the situation and to be reassured about the condition of their infants.
The findings of this study also highlight the effect of the admission of an infant to the NICU on the daily lifestyle of a family and on the parents and siblings. Admission to the NICU altered the family unit, lifestyle, and the relationships among family members. Furthermore, the atmosphere of the family was one of sadness, depression, and uncertainty over what would happen to the baby. The fathers of some infants in the NICU were unable to return to their daily work routine, making economic burdens a further type of stress that is placed on the families of newborns in the NICU. In Jordanian culture, fathers traditionally take responsibility for meeting the financial needs of the family, and mothers rear and take care of children, even if they are working mothers (Saifan, Masa’Deh, Hall, & Collier, 2014). This is why most of the potential father participants in our study were at work during the daytime. These findings contradict those of Crathern (2012), who found that the fathers of premature infants admitted to NICU were largely able to arrange their work schedules and times of visitation to meet the schedule imposed by their infants’ stay in the NICU (Crathern, 2012). On the other hand, the mothers in our study were torn between their hospital responsibilities and their families. This situation was clearly expressed in their stated feelings of being torn apart. This finding is supported by the findings of other research studies (Lindberg & Ohrling, 2008). It is worth mentioning here that extended family members, from either the mother’s side or the father’s side, provided social and psychological support in this study. However, even with this support, mothers still felt conflict between their home and hospital responsibilities and felt that they could not fulfill their roles as a mother in both places under the burdens of sadness, hopelessness, and worry.
Similarly, the hope among participants that their infants would be discharged and return home with their mothers fluctuated according to the improvement or decline in infant health. This explains the reason why families spoke of living in difficult situations that were surrounded by many unknowns. Thus, the psychological status of each parent in this study was not stable, and they worried about when to commence their normal parenting roles. This finding is similar to Crathern (2012), who found similar feelings among fathers of infants who were admitted to NICUs, and to a review article by Obeidat et al. (2009).
Another major finding was that good support from the healthcare team in the NICU generally and from nurses specifically is crucial to fulfilling the expectations and needs of parents. Consequently, the satisfaction of parents was influenced by the satisfaction of their needs and by the provision of support to them. The findings of this study identified two categories of parents. The first category was composed of those participants whose infants were admitted to private or teaching hospitals. Those parents appreciated the role of the healthcare team in discussing their infants’ situation, asking parents to visit infants, and helping in the caring process. Furthermore, these parents acknowledged their appreciation of the emotional, psychological, and spiritual support that was provided by the nurses. This finding is consistent with the findings of other research studies (Crathern, 2012; Obeidat et al., 2009). However, the second category was composed of those participants whose infants were admitted to government-run hospitals. All of the participants in this group expressed having bad experiences with NICU staffs and said they expected the caring process to be better than it was. Regarding the provision of support to those in the second category, most participants reported receiving no emotional or psychological support, although they expressed their desire to be supported by the staff. In addition, parents were waiting for the nurses or other healthcare teams to discuss their infants’ situation and to provide reassurances. This was in contrast to Lindberg and Ohrling (2008), who discussed the way verbal communication between nurses and mothers helped mothers feel confident in the nurses and the care they were giving their infants. The results of Lindberg and Ohrling indicated that mothers perceived positive support from healthcare staffs. Despite this, most of the Category 2 parents in this study expressed satisfaction with the care provided to their infants. This contradiction may be because of the lack of understanding of parents in this study of their rights and their infants’ rights under the healthcare system. Therefore, they appreciated the minimal level of care received, especially in situations where infants showed signs of progress.
The experiences of parents in this study were filled with sadness, stress, and anxiety. Having an infant in the NICU affects the whole family, especially mothers, who feel strain when they cannot be with the rest of the family. The parents in this study were satisfied with the healthcare process in the NICUs, even when this care did not fulfill their expectations or needs. The nurse’s role is very important in providing appropriate healthcare for infants. They also help parents through the stressful, challenging experience of the NICU by developing therapeutic and trusting relationships, providing emotional support, providing parents with accurate and clear information, and involving parents in providing care for their infant.
Clinical Practice Implications
The main implications of this study relate to nurses who are responsible to care for families with infants admitted to NICU. These nurses must be willing to listen to the experience, stresses, and needs of these parents and must be patient with parents’ queries about their infants. Increased knowledge regarding the experiences of parents in having a prematurely born infant is important to the further development and improvement of nursing care. Finally, nurses in the NICUs must develop interventions and strategies that minimize the stresses of parents and support their emotional capacity to deal with this stressful situation.