The family in the NICU

Mothers and fathers are usually faced with the situation of suddenly becoming parents much earlier than expected. They may be overwhelmed by finding their child in a critical health condition and by the unfamiliar environment of a NICU. They need time, social and psychological support, and encouragement to cope with this difficult situation and to find their role as parents. Additionally, this situation may also affect other family members, such as siblings, grandparents, or friends

Mothers

After the baby is born, mother and infant receive most attention and care. Some mothers are in a critical health condition and need time to recover. Nevertheless, they need to establish a strong and long-lasting bond to their babies. Separation right after birth interrupts this important bonding process. Skin-to-skin contact right after delivery and the early involvement of the mother in the childcare can support the bonding from the early beginning.

Mothers should be encouraged to breastfeed and to take over other parenting activities such as nappy changing. Psychologists or specialised professionals at the unit can support mothers to cope with the stressful and difficult situation and to develop a bond with their child.

Fathers

For fathers the situation of seeing their baby and in some cases their partner in the hospital dependent upon medical care can be very shocking. Furthermore, they might need to look after other family members and have to go back to work. This is particularly difficult when they work full-time and are not used to organising the family’s everyday life.

Fathers can also benefit from taking part in the care of their baby, for example by changing nappies, bathing, or providing skin-to-skin care just like the mother. It is very important to realise the needs and worries of the father and to see him as a vulnerable member of the family. They may also need psychological and social support.

Siblings

Having a little brother or sister in the NICU can be very difficult for older children. It can be hard for them to understand the situation and their parents’ behaviour and emotions. It may also be tough for them to accept that their parents dedicate much time for the new baby. Parents, grandparents or close friends can help to explain what is happening. Siblings also need time together with their parents to experience that they are as important as ever even if their parents need to take care of the new baby.

It is very useful to involve older siblings as much as possible in the new situation. If possible they should visit the baby in the hospital. Siblings can be encouraged to take pictures from themselves or to paint pictures in order to hang them close to the baby’s incubator. Parents can also take pictures of the new baby and show them to older siblings.

Other family members and friends

Family and friends are also concerned about the mother and the baby and would like to help without interfering. For parents, family and friends can be of enormous help at this stage. They can cook for the parents or other family members, look after older children, or help with organisational and administrative things.

In this way parents can spend more time in the hospital and be together with their baby. Mothers and fathers might not be used to accept help from others. They should be encouraged to do so. Parents should also actively ask for help, as relatives and friends may not be aware which kind of assistance would be most helpful.

For many families, having a preterm born or ill newborn baby is a very stressful and frightening event. It is an emotional, physical, and practical challenge for all involved family members. Especially parents can have very complex and conflicting emotions, changing during the entire hospital stay and even after discharge. Preterm birth usually happens unexpectedly. Parents coping with the situation of having a baby in the NICU have had no time to prepare for this circumstance.

In the beginning many parents are shocked with a feeling of chaos and helplessness. The new, unfamiliar environment at the NICU and the technical equipment surrounding their baby can cause anxiety and fear. Additional feelings such as sadness, anger, fear, shame, and guilt, can overwhelm them one by one or all at the same time. At the same time, parents may have other responsibilities left at home or at work.

Taking over left tasks or organisational and administrative issues for the family could be of great support. When explaining new thing to them it is important to do so patiently and sensitively due to the challenging situation. Parents need clear and easily understandable information, ideally in their native language. It could also be helpful for them to acknowledge and talk about their feelings. Being together with their baby as often as possible is one of the most important issues during this critical period of time. However, parents also need space and time for themselves.

Mothers and fathers usually have a lot of questions about their baby’s care, development, and prognosis. Sometimes they are confused about the treatment the baby receives. Doctors and nurses are the first contact persons to be consulted for all health related questions.

Most parents might rank their own needs below the needs of their baby. However, it is very important for them to look after themselves. Lowering levels of distress for parents is likely to have a positive effect on the baby as well. Basic needs such as eating sufficiently and getting enough sleep, may help to structure the day which can be comforting for the parents.

Psychologists, social workers, or special trained healthcare professionals can help parents and other family members to cope with the shock as well as to interact with the baby. Talking to the NICU team, the family members, or to other affected families at the unit can also be helpful in the beginning and later on. In some countries families with preterm born or ill newborn babies receive social or financial help from the government or other public bodies. Information about preterm birth and how to get help can also be obtained from parent organisations.

As soon as the baby is in a stable health condition, parents can be involved in the daily care of their child. Healthcare professionals can explain to parents how to manage everyday tasks. Parents will become increasingly confident after some time. During the entire hospital stay, the daily care (e.g. nappy changing, bathing, feeding) moves from being mainly the responsibility of the nurse to shared responsibility of nurse and parent until parents are finally able to take full responsibility.

In the beginning, many parents are afraid to touch their baby and the separation can by very painful for them. Looking at the baby for hours is the way parents get to know their child. To fulfil their parental role it is important for them to observe and learn how the baby communicates and acts so that they can respond sensitively to the infant’s needs. The healthcare team can explain to parents how to read and interpret the signs of their baby. This is particularly important, as preterm born infants behave and react different from term born infants.

Parents may need time before they are ready to touch their baby the first time. Healthcare professionals can explain to them how to touch the baby in a comfortable way. Hands should always be clean and warm.

Parents could start by offering a finger for their infant to hold, or by covering their infant’s feet, body, or head with the hand. Gentle firm touch is more comforting for the baby than light touch or light stroking.

As parents become more confident about touch they may be ready to comfort their baby. This can also be very important to parents. One possibility is the so called Comfort Hold, e.g., to help the baby to settle and fall asleep or to calm the baby during/after a medical procedure. The parent’s warm hand covers the infant’s head or feet. The other hand gently rests around the shoulders or holds the baby’s arms across their chest. The mother or father should be relaxed and breathe slowly and deeply. The baby can be hold like this until he or she settles. Afterwards hands should be removed slowly and one by one.

As a next step parents may now be ready to take over daily care procedures. Being the first person who provides care to the baby can mean a lot to a mother or a father. Sometimes it can be helpful for parents, to start with small steps such as finishing a task which was initiated by the nurse. In small steps they can now be more and more involved.

The following tasks could be taken over by the parents:

Mouth care

Cleaning the baby’s lips and mouth could be one of the first tasks parents could do. Therefore, a cotton bud can be dipped in expressed breast milk or sterile water. Mouth and lips of the baby can be cleaned slowly and very gentle with the cotton bud when the baby is awake and comfortable, e.g., during tube-feeding.

 

Skin-to-skin care

When a preterm or ill newborn baby is in a stable health condition, parents can practise skin-to-skin care (also called kangaroo mother care). This means that the mother or father holds the baby directly against the bear breast, skin-to-skin.

 

Breastfeeding and nutrition

Being responsible for the nutrition of a baby is one essential part of parenting. Breastfeeding can be challenging for mothers of a preterm or ill newborn babies, because these babies are usually not able to drink immediately from the breast. Therefore, expression of milk is the best solution to offer mother’s milk to a baby until breastfeeding is achievable. Mothers should be made aware that they will not produce a lot of milk at the beginning. However, every drop of milk is important for the baby and the quantity will increase over time.

 

Nappy changing

At first it could help parents to watch the nurse change the baby’s nappy. After a while parents can take over this task step by step, beginning with fixing the clean nappy at the end of the procedure and comforting the baby afterwards. As the parents feel more confident, they could take the process further each time.

 

Bathing

Parents may also be able to do the bath with the assistance of a nurse or midwife at some stage during their stay at the NICU. Some babies find a bath less stressful if they are wrapped up (swaddled) in a cotton blanket or towel. Even if this can be frightening for the parents in the beginning, it is usually a positive experience which helps parents to gain more confidence.

There are different approaches to integrate parents and family members in child care.

The introduction of couplet care in the NICU allows mothers to stay with their baby the entire hospital stay, even if the mothers still need medical care and treatment, e.g. after caesarean section. In a specialise unit the medical team takes care of mother and child at the same time. Couplet care can be one of the first steps towards family-centred care.

While family-centred care concepts differ between facilities, some aspects are similar. This approach helps to recognise the family as the important constant in a child’s life.

Family-centred care places the baby firmly in the context of the family, acknowledging that the family is the most important and constant influence on the infant’s development. At the same time, family-centred care concepts accept that the whole family is affected by what happens to the child.

While family-centred care concepts differ between facilities, some aspects are similar.

This approach helps to recognise the family as the important constant in a child’s life.

Family-centred care places the baby firmly in the context of the family, acknowledging that the family is the most important and constant influence on the infant’s development. At the same time, family-centred care concepts accept that the whole family is affected by what happens to the child.

The team in the NICU works together with the family to achieve the best for the baby. Many services are provided to the family as a whole instead of only focusing on the baby. This includes for example that parents can stay with their child 24 hours a day and are involved and instructed in the care of their child. Additionally, it can include social services, psychological support, or regular consultation hours for parents.

Another important aspect of family-centred care includes and informed or shared decision making. This means that the parents are informed about important steps in the care and treatment of their child and decide about them together with the healthcare professionals in a respectful partnership. Every decision is taken by respecting the family as an entity.

Family-centred care includes:

  • Responding to the family’s emotional and social needs
  • Making sure that parents and other family members receive clear information and understand their baby’s treatment
  • Asking for the parents’ consent before a treatment
  • Explaining parents how to care for their baby, and encourage them to become the main caregiver
  • Supporting the parents to develop a strong bond with their baby
  • Respecting and considering the religious and cultural background of the family

 

Some NICUs have the policy to involve other family members as well. In agreement with the parents, siblings, grandparents, and other close relatives may also be allowed to feed the baby or to provide skin-to-skin care. Especially for siblings, early involvement can be useful in this new situation.

Experts support the introduction family-centred approaches because many benefits for the infant and the family have already been demonstrated in several studies.

Supplementary tools

Welcoming parents and the family 24 hours a day and 7 days a week (24/7) in the NICU is the optimal way to encourage the family’s relationship with their newborn. However, it may not always be possible for all family members to stay with or visit the baby. In these cases, new technologies can be a good complement. Some hospitals, for example, provide video cameras, which can be placed above the bed of the baby. Parents or other family members can see their baby by using any internet connected device such as a mobile phone or laptop. They may benefit in different ways from this technology. It can be especially comforting to parents, grandparents, and siblings to see the baby, when they are not able to be in the NICU all the time.