A neonatal nurse’s insight into the stresses that affect the families of babies in the neonatal intensive care unit.

For the parents and families of babies admitted to a neonatal intensive care unit (NICU), the experience can be very challenging. Families may be faced with prolonged periods of stress, anxiety and often depression during the course of their child’s NICU stay. Indeed, the environment may affect parenting abilities, with adverse influences on the family unit, bonding and the infant’s long-term developmental outcomes. Adding to the difficulties, at the time a premature baby is admitted to the NICU, there is often uncertainty regarding the baby’s outlook. An important role of the neonatal nurse is to identify the parents’ difficulties and to help them overcome them during this potentially very stressful period. Neonatal nurses must strive for professionalism, with the greatest amount of integrity and compassion, while facing ongoing fears and concerns regarding the health status of the baby.

Stress created in a NICU environment

At any time in the NICU, it is usually possible to find a neonatal nurse providing reassurance and attempting to alleviate the fear and overwhelming stress the NICU creates for most families.¹ Neonatal nurses work hard towards achieving these aims and an appropriate balance is achieved most of the time. However, discussions with parents of premature babies months after discharge reveal that the memories they have of the early days in the NICU are very unclear, and they cannot recall many details and conversations that had taken place.¹ Comments such as, ‘They tried to explain what they were doing and everything, yeah……I mean it wasn’t really going in because I think I was in shock,’² are representative.

Parents may also find it difficult to understand the roles of certain individuals in the unit, while at the same time dealing with perceptions of conflicting information. This leads many families to seek guidance and ‘honest’ communication. This is probably a common reaction for many families who are experiencing increased feelings of anxiety and fear, hopelessness and loss of control.³ As the baby’s stay in the NICU progresses, parents learn how to fit in, form relationships with the staff and make some sense of the situation. Mothers have been reported to ’play the game‘ to receive optimal care for their babies following a NICU admission.⁴ Parents may sense that they are passive observers and demonstrate understandable shock and distress when seeing their child in a precarious environment to which few are privy.⁵ The parents hold fears for the potential adverse outcomes facing their child, predominantly death, and this apprehension has been recognised in a recent study.² Neonatal staff are required to guide families through these daily dilemmas, while at the same time striving to achieve the best outcomes for the baby and their family in the course of their work.

The father’s role

Many studies predominately focus on the mothers of the babies in NICU, although stress is significant for both parents. Fathers have been referred to as the ‘forgotten parents’ in the NICU, and may express feelings of being marginalised. They also demonstrate increased levels of stress and depression during this period, little of which has received serious study. Fathers often see themselves as the provider and protector; they take on the role of caring for other siblings, comforting the mother and communicating with concerned family and friends.³ Published studies have reported that fathers experienced a greater level of emotional exhaustion before and during the acute phase of their baby’s NICU treatment, and therefore are in need of support.⁵

A transitional time

The transition from the intensive care area to the special care nursery (SCN) can reignite feelings that parents experienced when their baby was first admitted. This is frequently related to meeting new staff and orienting themselves to new surroundings. This may be even more strongly felt if babies are transferred to another hospital for further convalescence. Common parental reactions are conveyed by quotes such as: ‘The staff did not seem to know much about the baby’⁶; ‘All of a sudden you seemed to have lost this cushion you always had: a nurse by your side’⁶; and ‘We did think “are they all competent?”’⁴
Many parents also find it difficult to believe in the progress of their baby. Fortunately, with time, parental confidence grows, as does their ability to care for their child, allowing parents to assume the role of caregiver before discharge.³ The success of this change is achieved with the help of the nurse caring for the baby and how they actively encourage and support parents in the care of their child to prepare them for their life ahead.

A neonatal nurse’s insight

While no two days are the same, what follows is typical of the neonatal nurse’s daily experience:

‘The day usually starts with walking down the corridor to find a family looking bewildered and not sure where to go or even how to see their baby. Grandma is trying to deal with the two-year-old toddler, while she is extremely anxious and worried about her daughter’s pain and not sure what the outcomes will be from this point.

‘Gently, I guide the parents to the hand-washing bay and the many concerned relatives to the family room. After describing the scene that they may encounter when they first see their baby attached to monitoring and respiratory support, I lead them into the NICU. We try to prepare the parents for that first moment they see their baby, though nothing you say helps with the shock and the fear that they will encounter.

‘The next weeks and in some cases months, a partnership begins to form between the staff and families. I cannot presume to know what these families are going through, as everyone’s journey is different; I can, however, provide them with the necessary tools to help guide them forward.’

Personal reflection

Parents of a baby were asked to contribute some words describing their time spent in the NICU, what follows is their personal reflection:

‘Even now, two years after we left the hospital cradling a baby boy with an uncertain future, we can be transported back to our time in the intensive care unit in an instant. We must have washed our hands more than 100 times during our son’s 12-day stay in the NICU, and all it takes is a similar smell to the hospital hand wash to bring the memories rushing back.

‘Our baby is now a healthy, happy, thriving boy, but when he was born, in March 2009, he was as near to death as is possible. The frantic scene of his resuscitation by the response team from the NICU will always be a blur, a surreal experience that still feels like it happened to someone else.

It was probably only a full day later, when Aidan was settled in upstairs and attached to so many tubes and wires that it even began to sink in that this was our firstborn son fighting to stay with us. And what a team he had in his corner. The doctors and nurses were incredible, even when they told us things we couldn’t bear to hear. We still remember the sense of amazement when it dawned on us that it didn’t just seem that nurses were always by his side, they actually were. While that reminded us just how sick he was to need 24-hour-a-day monitoring, it was also an immense comfort. When we had to snatch a few hours sleep, we knew there was always an ‘angel’ of the nursing staff standing by him.

‘Our 12 days spent in intensive care took us to places of stress and despair we had never imagined we would be. It also made us discover an inner strength and embedded our faith in the people who care so much for those little children. We would not have dared think it possible the day we walked out of hospital and took our son home, but out of that incredibly stressful experience has unfolded a story of surprise and joy.’

Conclusion

To ensure the best outcomes for babies and their families, a partnership using the principles of family-centred care including respect, support, flexibility, choice, collaboration, information and empowerment is essential.⁷ It has been demonstrated that families experience stress and despair that is unimaginable, as expressed through the words of the family that spent time in our NICU. Staff and parents need to work together creating an environment that promotes the family unit. Understanding the family experience by reviewing practices and receiving parental feedback will help neonatal nurses and all members of the NICU treating team help guide families though this complex journey.

Acknowledgements

I would like to thank John-Paul and Sharon Moloney for their contribution to this article.