The birth of a preterm infant can be devastating for a mother and her family. The wishes and dreams associated with the perfect pregnancy culminating in the perfect birth of the perfect infant have been shattered. Simultaneously as mothers are recovering from the birth, they are tasked with learning their way around a neonatal intensive care unit (NICU) where their infants will be cared for by someone other than themselves. NICU hospitalizations can last for several weeks to several months, depending on the medical condition and gestational age (GA) of the newborn. The experiences of mothers during their infants' NICU hospitalizations are well-documented in the literature and have enlightened our understanding of the shock and grief they face during this period.1 Additional research findings have underscored the need for higher-than-normal postdischarge medical visits and the increased hospital readmission rates (10%-35%) for infants born preterm2-7; few studies, however, have provided a clear view of the period of time immediately following NICU discharge (during the first few weeks and months at home) from the perspective of the mother.8-10 This lack of information has led to a knowledge deficit in understanding what happens on a day-to-day basis after an infant is discharged from the NICU. The intent of this study was to learn from mothers of preterm infants by interviewing them during the first 6 months at home after their infants' discharge from the NICU and asking them to describe in their own words their experiences of caring for their infants.

BACKGROUND

Preterm birth is a serious healthcare challenge in the United States with approximately 12% of the 12 000 babies born each day arriving at less than 37 weeks' GA.6 In 2007, the cost of caring for a preterm infant during the first 12 months of life was $49 033, as compared with $4551 for a full-term infant.6 This totals approximately $26.2 billion annually in the United States.6 Although this financial cost is significant, the personal toll a preterm birth can take on families, in both the short and long terms, can be immeasurable.

Unlike the birth of a healthy newborn, which is an event usually celebrated by both immediate and extended family members, the birth of a preterm infant leaves parents with feelings of grief and fear. Thoughts of their child's future no longer focus on long-term planning but instead concentrate on questions of survival, developmental delays, and future challenges.10-12 Often the preterm infant is removed from the delivery or operating room immediately after birth and taken to a NICU where the focus is on providing emergent care for the infant rather than on missed bonding opportunities. This loss of time with her infant can severely limit a mother's opportunity to learn her infant's early cues. As time away from her infant increases, these processes are further eroded and both maternal-infant bonding and attachment become more difficult to establish.13-15 The accumulation of these lost opportunities added to the sorrow and grief the mother already feels can take a serious emotional toll on mothers and can lead to adverse mental symptoms being exhibited for weeks, months, or years.10,14-16

The stress associated with NICU discharge is a well-known phenomenon, with parents being asked to assume responsibility for the daily care of their convalescing high-risk infant at home.17,18 Research has indicated that for mothers of infants born at lower GAs, the concern experienced while providing this care can escalate after discharge resulting in higher than normal mother-initiated healthcare visits during the first weeks and months postdischarge, and continuing for 6 months or more.2,4,8,9 Because these early postdischarge months present with such intense challenges for mothers who serve are primary caregivers to their preterm infants, and because there is currently little research highlighting this specific time period, the first 6 months at home following NICU discharge were selected as the focus of this research. The purpose of this phenomenological study was to examine the experiences of mothers of preterm infants during the first 6 months at home following discharge from a NICU. The research questions were as follows: How did mothers experience the early days and weeks at home following NICU discharge; what did they learn about caring for their infant; how was it learned; and in what contexts or situations did these experiences occur?

METHODS

Research design

The research questions lent themselves to a phenomenological approach where the focus was on understanding and describing the everyday experiences of mothers of preterm infants in the postdischarge period. Although several approaches to phenomenology were considered, transcendental phenomenology as espoused by Moustakas was chosen to guide this study. Moustakas' approach focuses on conducting individual interviews with study participants who have all experienced the phenomenon being researched. Each participant's retelling of the experience is recorded exactly as related by them, and from the resulting data, themes are identified and compared among participants. From this comparison, commonalities begin to emerge that will become the framework for the construction of an essence statement to accurately represent the phenomenon as experienced by all study participants.19 The goal of phenomenological research is to gain entree into the lives of others to view things from the others' vantage. To be successful in this goal, a commitment by study participants to emotionally return to a phenomenon and to provide comprehensive, first-person descriptions is required. This study was approved by the university's institutional review board, and all participants gave informed written consent.

Sampling

Phenomenology does not specify a required number of study participants; however, the recommended number is normally no more than 10 to 12 individuals.20 For this study, mothers of preterm infants who met the criteria of having had a first-person experience of the phenomenon and who were willing to participate in the study were asked to self-identify.19 Study participants were recruited through the use of advertisements placed in local newspapers in northern Virginia and through flyers placed in prenatal clinics and the NICU of a large health center. Mothers were asked to contact the researcher via e-mail if they had an interest in participating. A consent form, along with a short synopsis of the study, was mailed to each mother prior to the first interview taking place. Following the initial contact, volunteers were screened by telephone to ensure that they met inclusion criteria. Volunteers who were 18 years of age or older, who had given birth to a singleton infant born between 24 and 34 weeks' gestation, without serious sequelae, that is, ventilator dependence, and who had been discharged from a NICU to home for 1 to 6 months were invited to participate. From a group of 19 mothers who initially expressed an interest, 9 met study criteria. Of the mothers not selected to participate in the study, 7 had given birth to multiples and 3 had had their infants discharged from the NICU for longer than 6 months. Eight of the 9 mothers agreed to be interviewed; one mother could not be contacted despite numerous attempts. Mothers were informed that they could withdraw from the study at any time and have their data removed from findings.

Data collection

Phenomenology uses an inductive approach to data collection, focusing on the entirety of the experience exactly as described by study participants.19 Consistent with this methodological approach, data were gathered through in-depth interviews that were audio recorded. Each interview was transcribed verbatim and participants were contacted by the researcher as needed to discuss areas where wording or intent was unclear. Interviews were scheduled according to a mother's availability and took place either at her home or another place of her choice. Each participant was interviewed one time. Interviews lasted from 60 to 90 minutes. The interview process was one of open dialogue between the study participants and the researcher. The natural rhythm of each interview was established by the study participant with the researcher following the mother's lead. Participants were first asked to tell the interviewer about their first few days at home following their infants' discharge. Further questions focused on how each mother learned to care for her infant at home and how the learning occurred. Additional questions were used as follow-up to elicit detailed descriptions about the context in which they learned, the people who were with them in the early discharge period, and what they were experiencing, emotionally.

Data analysis

Data were analyzed using the Moustakas19 method and included the following steps: (1) the Epoche process of setting aside a priori thoughts; (2) phenomenological reduction, which reduces the data through horizontalization by identifying significant statements or horizons, setting aside redundant or other statements not considered pertinent to this study, identifying and organizing themes from the horizon statements; (3) imaginative variation where textural and structural descriptions of the experience were developed; and (4) the integration of the fundamental textural and structural descriptions into a unified essence statement reflective of the spirit or essence of the phenomenon as it was experienced by all participants.

The Epoche process

Moustakas referred to the Epoche process as one through which a researcher sets aside personal beliefs or biases and relies only on present consciousness to inform.19 It is facilitated through first identifying and then consciously bracketing or setting aside any idea or personal experience that might serve to prejudice or bias the researcher's ability to accept each participant's retelling of the phenomenon exactly as described. The Epoche process was used throughout this study both prior to each interview and again as transcripts were prepared, read, reread, and analyzed. The process included listening to the audio recording of an interview while reexamining personal notes, on a mother's facial expression, hand gestures, the rise or fall of her voice, tears, laughter, etc, as she shared a specific memory. This supported the researcher's ability to see each study participant as an individual with a personalized reaction to a situation that might have been common among other participants.

TRANSCENDENTAL-PHENOMENOLOGICAL REDUCTION

Horizontalization

The first step in the reduction phase is horizontalization. During this step, data recordings were transcribed verbatim and each transcription was reread while listening to the data recording to ensure accuracy. Field notes were reviewed to provide context. Each statement was accepted at face value and served as an important component of the phenomenon as experienced by a study participant. Each was tested to ensure that it related to the phenomenon of interest and was not redundant. Statements not meeting the 2 criteria were set aside. Themes were identified and organized in textural descriptions of the phenomenon, that is, What they experienced. This process was completed individually for each of the 8 study participants.

Imaginative variation

The third step in the process is referred to as imaginative variation, the structural description of How participants experienced the phenomenon. The imaginative variation process involves reviewing the experience from the divergent perspectives of each participant, looking at all possible alternate meanings and perspectives. In this study, the descriptions were reflective of how each participant met the responsibilities associated with providing care for their preterm infant at home, that is, what were the conditions associated with providing the care; were there other factors that had bearing on their experiences.19 Once textual and structural descriptions were written for each study participant, they were reviewed and reflected upon individually to ensure that they adequately portrayed the feelings expressed by study participants. Using the individual descriptions, comprehensive textural and structural descriptions for the whole sample were developed.

The essence statement

To complete this final step, the researcher reflected on the integration of individual and collective descriptions of the phenomenon as portrayed by study participants. Several words were selected as possibly reflecting the essence and through continued synthesis and introspection the researcher identified the strength and resilience that were integral to each participant's statements. This recognition enabled the researcher to construct an essence statement reflective of both the individual descriptions related by study participants and the overall descriptions representative of the group as a whole. The essence of these mothers' experience was their resolve to do whatever was necessary to ensure the best possible outcomes for their infants.

Rigor

Moustakas' approach to data analysis calls for the researcher to describe the personal experiences that influenced their decision to do research on a particular subject.19 In this study, the researchers were all maternal-child healthcare providers who had extensive experience working with mothers of infants who had been born preterm. The researchers discussed these experiences. In addition, the first author who conducted the interviews and primary analysis for the study discussed her approach to interviewing and data analysis with a peer reviewer with experience in phenomenological methods but not in working with mothers of preterm infants, and with the other researchers who had experience with both methods and content. Biased points of view were identified and discussed as they emerged.

FINDINGS

Eight participants were interviewed over a period of 4 months. Of the 8, 5 were married, 1 was single, and 2 were in what they described as "committed" relationships. Four had college degrees, 3 reported having "some college," and 1 was working on her general education diploma. Four participants reported owning their home, 3 lived in apartments, and 1 was living with her parents. None of the participants had previously given birth to a preterm infant who had been admitted to a NICU for care. Four participants were first time mothers, one had had a fetal demise at 24 weeks, and 3 had other children at home. Infants' gestation, birth weight, days in the NICU, and oxygen use at home are highlighted in Table 1. All infants in this study were discharged on apnea monitors.

Table 1. Infant demographic information

When interviewing study participants about the early weeks and months at home, it was apparent that what they had experienced could not be accurately represented using a linear approach. Feelings associated with learning that their infant would be born too soon were intermingled with their feelings of having an infant in the NICU and these remembrances led to discussions about those first weeks and months at home and what impact they felt the NICU had on that time.

Fear of the unknown

Mothers spoke at length about the fear of the unknown, not knowing what to expect and thus, unsure of how they would manage. This fear was recognized soon after their infants were born and was reinforced during their final visits to the NICU as they completed paperwork and received whatever final instructions were deemed necessary to complete the discharge of their infants. (Pseudonyms are used to identify both infants and mothers.)

As Tina's mother said: "It took like two or three people there [NICU] to take care of her and now we have to rely on our two eyes and ears to care for her?"

Orson's mother: "... he'd almost always have an episode of bradycardia, [whenever he fell into a deep sleep] which of course would scare me to death because this was the stage where we still had to physically stimulate him, so it was a nightmare."

Some mothers doubted their infants' readiness for discharge, such as Serena's mother, who said: She was doing fine but her eating was not at the point where I would have said, "yes, she can be discharged," so that was really scary ... even though they told us she took longer than they would have liked to feed, but they still let her go."

Mothers also reported inconsistencies in the functioning of monitors that were necessary because of their infants' fragile state. They felt these inconsistencies added significant additional stress and fear to their days. As Francis' mother noted, "I brought him home from the doctor's office, I had fed him and changed him and I noticed that he was just laying there so I started talking to him, calling his name and rubbing him but he was turning blue and purple in the face and finally I called the paramedics ... then his face got pink again and all this time his monitor never went off." While most of the mothers related how they looked forward to that time when their infants would no longer need the monitor, once that day arrived, they began to realize how much they had come to depend on its assurance that their infants were breathing. Tina's mother: "At first I was too scared to take a shower ... if I didn't hear her, how would I know she was still breathing or that her heart hadn't stopped? It's still there [fear] even after four months." Orson's mother: "I remember just constantly reading the CPR cards to make sure I knew how to do it because I was terrified something would happen to him." Mothers also described feelings of impending doom during those first weeks at home. "Every day it's just you feel like 'I'm waiting for disaster to happen,' every day" (Tina's mother).

Mothers also reported being so afraid that their neonates would die during the night that they put their infants in their bed to sleep; every mother in the study admitted that her infant coslept in her [mother's] bed. They remarked that they would wake at all hours of the night just to feel for the infant to ensure he or she was still breathing. Tanya's mother said, "she sleeps with us ... I always feel like I gotta wake up and feel her ... I have to make sure, I have to wake up and look over, make sure she's still breathing and then I can go back to sleep."

Mothers also discussed their fear of what the future might hold for their infants. Several mothers reported that their infants were still having frequent pediatrician visits while others felt their child was progressing appropriately for their corrected ages.

Exhaustion

Mothers reported feeling exhausted during those first months at home, which they related to both the extra care their infant needed and their need to be "instantly awake" whenever a monitor sounded or the baby made an unusual noise. As Tina's mother noted, "Even when sleeping becomes a little easier you still wake up in a panic and need to run and check on [her] because you've slept for awhile and you don't know what's happened." Francis' mother: "Every time he moves I wake up to be sure he's OK."

Several mothers stated that once awakened, it was usually easier to just stay awake until the next feeding so they did not worry about sleeping through it. This was especially true when an infant was being fed every 2 hours to make up for weight lost during the transition to home. They related the first weeks at home as being a "blur" of trying to do what needed doing, snatching sleep, and maybe get a shower. The exhaustion also extended to their families, especially where an infant was on a monitor. As Orson's mother noted whenever an alarm sounded, "It wasn't just one of us getting up with the baby, one of us had to go and quiet the dog and get our toddler and settle him back down and tell him 'everything's OK, it's just a noise so don't worry about it' while one of us would tend to the baby... so it was just a circus... but not in a good way."

Mothers spoke of the toll this lack of sleep took on spousal relationships and admitted being short-tempered and "at each other's throats" due to the exhaustion they felt. Mothers also described the energy it took to make the rounds to the different medical specialists, especially if they did not have help. They spoke of getting their infant, apnea monitor, and oxygen loaded into the car to get to a physician's office, unloading and then reloading for the ride home. For many mothers, this process was multiplied because of the number of appointments scheduled not only with the pediatrician but also with a pediatric cardiologist, neurologist, or ophthalmologist. They described those visits as necessary for the health of their infants but nevertheless, "painful" to experience. They reported feeling that the time spent just doing what was necessary for the survival of their infant robbed them of other moments to just sit and hold their babies. Several mothers in the study who worked at full-time jobs outside the home reported staying up an extra hour during the mid-night feedings to have uninterrupted, one-on-one time with their infants. They reported that having this special time allowed them to get to know their infants better, which they felt more than compensated for their loss of sleep.

The mothers felt their exhaustion exacerbated their feelings of isolation-that no one, not even their spouse or partner, really understood how difficult it was to provide the necessary care for their infants. While family and friends were trying to be supportive, as Orson's mother noted, "I don't care how many friends you have and how many babies they've had, if you didn't have a baby in the NICU, you don't get it."

Determination

Each mother in the study stated that her infant would not be "held back" because of preterm birth. They decided while in the NICU their infants would have the best possible care regardless of the time or energy needed to ensure it. One of the younger mothers who lacked personal transportation reported riding 90-minute 1-way to get her son to the required medical visits. Mothers who worked full-time before giving birth tried to rework their maternity leave so that they could use most of it when their infants were discharges. One mother, an ICU nurse, returned to work 2 weeks after her cesarean section to save leave for when her daughter would be discharged.

Mothers also discussed their plans for meeting future challenges, which included ensuring that their infants not only prospered but achieved. They spoke about goals and overall outcomes they wanted for their infants and concluded each statement with an expression of determination, that everything would be "fine," that "everything is going to be OK," or "She'll be fine ... He'll be fine... We'll just see to it." Many mothers recognized that they were their infants' best advocates. Several stated that although they listened to what the physicians said and considered their advice, they never forgot that their job was to advocate for their children, regardless of what the long-term outcomes were projected to be. As Tanya's mother said after a not-particularly-uplifting visit with her infant's physical therapist: "You know what? She [is] gonna do those things [be] cause I'm going to make sure she does them." Elizabeth's mother echoed this idea, saying, "We don't exactly know what's going to happen as she develops, but that's OK, we'll take care of it (smiling at her daughter)."

Mothers were also determined to protect their infants, even if that meant doing battle with their spouses or partners. As Tanya's mother said, "They're [fathers] like 'Oh I don't want to do that [physical therapy exercises] because she doesn't like them... I just want to hold her' and I'm aggressive, I'm like 'Look, you HAVE to do this because this is how it goes.'"

A good example of determination came from one of the single mothers as she talked about working to make ends meet on a single salary while still providing the best developmental environment for her daughter. One item her daughter was especially drawn to at the developmental pediatrician's office was a toy that made a crackling noise when you grasped it. When she priced the toy and found it to be prohibitive, she returned home and began to look for a viable substitute. One evening she noticed that her daughter's attention was drawn to the sound of a potato chip bag being opened and closed, and she realized that it made the same crackling noise as the toy. During the next shopping trip, she bought a box of lunch-box size bags of chips and instructed her little brother and her son to "hurry up and eat and don't throw the chip bags away." The empty bags became an inexpensive replacement for the toy that her daughter enjoyed, while also serving to help her develop a better grasp with her nondominant hand. Tanya's mother related all the poor predictions she had been told about her daughter's abilities and how she decided she would listen but that in her mind she kept thinking, "I know she can do better and I can work with her more... [And] she'll be fine."

Thankfulness

Most mothers in the study spoke about at least 1 person who had worked with them and had made a difference. As Orson's mother noted, "That NP [at the apnea clinic] was amazing... the best... she understood everything." And Elizabeth's mother said, "The nurses and neonatologist always talked to us like humans."

In fact, although each recognized that giving birth to and caring for a preterm infant was the most difficult thing they'd ever done, all mothers expressed a thankfulness to be where they were currently. As Elizabeth's mother said, "It's been a roller coaster and that's OK." And Tanya's mother said, "If you had seen her from before to now, you'd be like 'wow, she really has [come a long way]." And as Seth's mother noted, "It's been a long bumpy road, but it will be OK. Of course we were lucky with him."

Many spoke of the "miracles" that had happened to enable their infants to be alive and well and their wonderment at the positive outcomes they had experienced, especially when the odds were against it. Serena's mother stated, "I consider myself very lucky that she's here and alive ... a lot of babies just die of it [Abruptio] and she didn't ... and neither did I ... so 25 weeks is not that scary compared to what could [have] happened."

Some mothers had other reasons to be thankful. For example, one mother, who is HIV positive, expressed her thankfulness that her infant, thus far, has not shown any signs of developing the disease. Each mother reported thankfulness for the support she received from friends or through a formalized group, and the positive influence this outside support made in their emotional outlook. Keith's mother said, "Whenever I get tired my mom will say 'bring him to me and go take a nap or something' [and that] helps."

DISCUSSION

Mothers in this study described their experiences of caring for their preterm infants during a private interview, using their own words, and although their descriptions were particular to their representation of the experience, the feelings associated with their experiences were similar among study participants. Although the challenges parents of preterm infants face while trying to navigate the NICU environment and the long-term consequences of stress on maternal and family outcomes5,10-15,17 have been reasonably well investigated, this study provides data for a period that has heretofore received limited attention from researchers.11,13-15,17

This study sheds additional light on the fear and exhaustion that continue for months postdischarge as well as on other nonemergent problems that contribute to the significant stress already being experienced. These findings are consistent with research that shows that the first 6 months after discharge, the time span for this study can be the time of greatest anxiety for caregivers.15,17

Mothers in this study described the time following NICU discharge as being the most difficult of their lives, fraught with unexpected challenges as they struggled to reprioritize their daily activities to manage their new role as primary caregivers for their infants. This is consistent with research that indicates that even mothers of full-term infants work to rearrange their lives to meet the needs of their infants, themselves, and their families.21,22 Mothers in this study expressed surprised at the extra demands on their time and energy, especially during the first several weeks after discharge as they continued their infants' feedings every 2 to 3 hours and made the rounds of required medical visits resulting in exhaustion for the mothers. These findings are consistent with those of other researchers who found that these feelings of exhaustion often extended through the first year of life and had the potential of becoming a major barrier to the mother's ability to bond with her infant.16,17

Mothers reported an overriding fear that accompanied every infant-focused task they completed for the first several months at home following discharge, which is consistent with previous findings where mothers of low-birth-weight preterm infants reported feeling insecure about their role as caregivers even at the 6-month mark.16,17 Mothers also reported feeling continually overwhelmed with just the day-to-day requirements of the care they were being asked to provide, the medications they were being asked to administer, and the numerous steps they were required to remember in order to keep their infants safe. These findings are supported by the work of other researchers who have demonstrated that preterm infants are being discharged earlier, sometimes while still requiring complex treatment modalities such as tube feedings, administration of medications, or oxygen, all of which can leave even the most well-prepared mother feeling anxious, overwhelmed, unprepared, and afraid.2-4,10,12,15,17 Mothers spoke at length about the stress caused by monitor alarms that would either sound inexplicably in the middle of the night, awakening the whole household, or not sound at all even when their infants had stopped breathing, and their dismay at not knowing who to turn to for help to fix the problem.

Mothers reported continuing feelings of anxiety, even after successfully making it through the first several months at home. They worried about what consequences their infants might face as a result of being born preterm, consistent with prior research findings.2 It has been noted in other research that mothers of preterm infants often have an unrealistic view of what NICU discharge really means.23 Their joy overshadows the reality of what's involved in caring for their infants at home as they sense the need to be constantly on guard for any changes that might indicate a problem. This was corroborated by study participants who reported their happiness at finally being able to take their infant home. However, after the first several days of awakening every 2 to 3 hours to feeding their infants coupled with realization of the amount of time and energy involved in providing all aspects of care, mothers began to wonder how long they would be required to keep this pace. This is consistent with the findings of a study of 152 mothers of preterm infants who reported making 109 visits to physicians, 14 visits to emergency departments, 19 visits to clinics, 42 visits to a nurse, and 11 visits to other healthcare providers during the first 3 months after the infant's NICU discharge.24 The mothers in this study support these findings by describing the numerous medically necessitated office visits required during those first few weeks at home and the challenges associated with getting there.

All mothers who participated in this study received support from family and friends following the birth of their infants. The mothers considered the support they received a mitigating factor in managing feelings of isolation and stress exacerbated by the exhaustion they experienced as they moved through their day-to-day routines of providing care for their infants. The positive impact of support has been well documented in the literature, with mothers who received encouragement from other mothers of NICU graduates, or reassurances from husbands or partners reporting feeling more optimistic about the care they were providing, resulting in better overall outcomes for both mother and infant, especially if the support began during the early weeks after NICU discharge.7,25-28 This is important to note since feelings of isolation have been found to persist up to 1-year after NICU discharge.17

Each mother in the study expressed her determination to do the best, be the best, and provide the best for her child. This was not contingent on finances, marital status, or the time and effort it might take for her child to reach developmental milestones. They discussed their future plans and acknowledged the roadblocks they might be facing, but felt this was minor compared to the courage exhibited by their infants both during the NICU stay and once discharged to home. A majority (6/8) spoke of their infants as heroes, having overcome tremendous odds and sometimes noxious treatments to stay alive.

All mothers expressed thankfulness for their infants and the fact that they had met the necessary criteria to be discharged to home. Even mothers who described the NICU environment as being intolerable reported forgetting everything negative that had happened once discharge occurred. These feelings of thankfulness are supported in current literature where mothers expressed gratitude that their infants had survived until discharge, for the help both they and their infants had been given, and for the knowledge and skill the NICU nurses displayed while providing care for their infants.16,29-31

Implications for research

This study, while it addresses a knowledge gap, still presents only a partial picture of this important time. Additional research employing longitudinal design would provide a better understanding of what mothers feel they need during these important early months at home and could provide an important tool for the design of interventions and programs to address these needs prior to discharge. Such research would be particularly consistent with the current emphasis on patient-centered outcomes research.

Implications for practice

The findings of this study have important implications for nursing.

* Mothers feared the uncertainty engendered by their infants' discharge. Contributing to their fear was anxiety over aspects of care they felt they had little experience with, such as giving prescribed medications to their child. Opportunities to administer medications several times prior to discharge under the nurse's supervision might address this concern. A similar area of concern surrounded the use of monitors. Monitor teaching could be reinforced as parents spend the night with their infant in the NICU and assume total care of the infant. Although many NICUs regularly institute this practice, it might be important to make sure that the monitor does sound at least once during the night so that parents have the chance to respond to it and learn how to intervene appropriately. If this is not possible, impromptu instruction by the NICU nurse, whenever their infant's monitor does alarm, might serve to alleviate some of this anxiety.

* Mothers in this study acknowledged that they needed to be told, retold, and told again how to do things for their infants. Many times, especially if their infants were not having a good day, mothers knew they were receiving information about what had happened and sometimes instructions on how to handle it at home, but they were not able to grasp what was being said to them. They felt that all important information and instructions needed to be reinforced several times before discharge in order for them to have a complete understanding. New instructions that were left until the day of discharge were completely lost to them in the stress of bringing their infants home.

* All study participants seemed to understand the "back to sleep" concept, yet the risks of cosleeping seemed to be outweighed by their need to be near their infants during sleep. Not only is cosleeping a risk for the infant, it may contribute to the exhaustion experienced by the mothers. Certainly recommendations on sleeping arrangements are part of discharge teaching, and infant safety must remain the primary focus, however, talking with mothers and fathers about the potential advantages to the quality of their own sleep may also be helpful. To alleviate parent fears about separation from the infant during sleep, creative solutions may need to be considered.

* Mothers discussed the support they received and how it helped mitigate feelings of isolation and sadness. Support groups may be a solution to reducing these feelings. Monthly get-togethers located in the NICU parents' area with representatives from local support groups could be planned more regularly. These meetings could be attended by NICU staff or completely independent, occurring during the day, in the evening or on weekends, depending on the needs of the families in the NICU.

* Neonatal intensive care units may want to consider continuing contact with families in the postdischarge period specifically to address emergent questions and concerns that parents may have as they assume full responsibility for their child's care. Such contact may lead to fewer rehospitalizations as well as reducing parent fears.

Study limitations

Study limitations include the use of a convenience sample (n = 8) of mothers, the majority of whom were drawn from a small geographic area in the Washington, District of Columbia, Northern Virginia area of the United States, representing infants discharged from 5 different NICUs. Approximately 75% of the mothers who met the criteria for inclusion came from middle-class or upper-middle-class backgrounds and had attended at least some college. Approximately 80% had private insurance and were married. Although differences in education levels, especially as it relates to income, have been shown to mediate some of the effects of preterm birth,32,33 the concerns of these well-educated study mothers were high. This raises a question about the levels of concern mothers who are not so well educated or who are dependent on public assistance for medical care might have. Finally, all mothers who participated in this study were English speaking. Thus, the findings cannot be applied to non-English-speaking mothers.

CONCLUSION

The transition from the NICU to the home is a time of mixed emotions for most parents as the high levels of care their infant has received by teams of well-trained professionals is, by necessity, transferred to them. Moreover, the consequences of preterm birth do not end at discharge from the NICU. This study has reported on mothers' experiences of caring for a preterm infant following NICU discharge. The findings confirmed that this is a time of fear as these mothers face the new reality of caring for their infants on their own. The aim of this study was to further inform our understanding of how mothers survived those early days at home by asking them to describe their experiences in their own words. Each of the mothers participating in this study admitted that it was the most difficult time in their lives and nothing they would like to repeat; yet, each expressed thankfulness for their child and determination about their child's future. The participants' suggestions are relevant to and have applicability for many mothers of preterm infants. Their willingness to describe their experiences has provided information that may be useful in the development of programs for discharge preparation as well as supportive, post-NICU discharge programs of care.

References