WHERE NEXT?

In the medically led neonatal unit, the emotional needs of parents and babies can be overlooked. Joanna Hawthorne, PhD research psychologist at the Centre for Family Research, University of Cambridge looks at the support networks available and what more could be done.

Many parents who have premature or ill babies needing specialist care have never been into a neonatal intensive care unit (NICU) before. Most parents feel numb and helpless, and find it very hard to take in all the information that is being given to them. It is a totally different experience from the one they may have envisaged when they were thinking about the birth of their baby. It can be a mentally and physically draining experience.

The overriding question for parents can be 'How can I be a parent to my baby?' Staff in neonatal units are welcoming and encourage parents to do as much as they can for their baby (see What to do). But quite often, parents hold back from getting too involved in case their baby might die. They sometimes say they wait to buy clothes and items for the baby until they know the baby is coming home for sure.

Parents often feel:

Shock: Why did this happen to us? Is there something I did to harm my baby?

Grief: This is not the baby I had hoped for; I have lost my pregnancy.

Guilt: I did something in my pregnancy that has made my baby come early.

Denial: I cannot bear to think my baby might die, so I need to put up a defense to protect myself; I might also try to think everything will be all right when staff are telling me my baby is very, very ill.

Detachment: I don’t want to get too close to my baby in case he dies. It is too painful to care deeply and I feel so helpless.

Projection: Someone else has caused all these problems for my baby.

Anger: I want my baby to myself so I can look after him in my own way.

Parents can suffer post-traumatic stress disorder and depression. Quite often, the depression might not start until the baby has been at home for a few months. As the baby begins to reach their milestones and seems to be all right, all the stress and trauma the parents have experienced can hit them.

Establishing relationships

In many units, the emphasis is on the medical care of the baby, and sometimes overlooks crucial relationships, such as those between parents and infants, doctors and nurses, doctors and babies, doctors and parents, nurses and parents and nurses and babies. Within the neonatal unit, identifying the needs within and between these relationships is crucial to supporting the parenting of the babies.

Staff and parents in neonatal units are coping with many emotions. This is partly because there are many painful feelings on all sides: the babies are experiencing painful procedures, the staff are experiencing pain as they carry out painful procedures and sometimes have to deny their feelings in order to proceed, the parents are experiencing pain with their fear that their baby might die, and they are experiencing grief and loss of the possibility of a healthy full-term baby. As Born too soon showed, although great strides have been made with neonatal intensive care, some babies simply cannot be saved. Some, but by no means all, neonatal units have counsellors, or psychologists, or psychotherapists, for parents, staff or both. Organisations such as the Child Bereavement Trust can offer help.

Parents should take a lead from research that shows the importance of promoting positive mental health in infancy. Parents have a key role in this which can alleviate the feeling that everyone else is in control of their baby's life.

Positive touch

It has been found to be crucial to premature babies' physical, mental and emotional development to protect them from the noisy, bright environments of the neonatal unit, protect them from pain, and protect them from too much handling. This can improve the baby's physical and mental development, and increase weight gain. This work has emphasised the need to observe and make a care plan for the individual baby through the Newborn Individualised Developmental Care and Assessment Program (NIDCAP). Sick full-term babies also benefit from the NIDCAP. A family-centred care plan is developed using observations of the baby's behaviour as the basis. Positive touch and baby massage can help parents keep their baby calm and learn to read their signals.

What is missing in some neonatal units?

First of all, families need to be physically comfortable. Neonatal units that provide appropriate facilities and comfortable surroundings can help them to cope. Such things as hot and cold drinks, snacks and good food, pleasant rooms to stay the night in with double beds and nice furnishings and constant access to their baby helps parents feel comforted themselves.

Parents also seem to benefit from seeing all the positive things their baby can do. Instead of concentrating on reading the monitors, they find it helpful to observe their baby's individual reactions and learn their likes and dislikes.

What is my baby's personality like?

In an effort to support parents while their baby is in the NICU and at home for the first two months, an observation plan called the Neonatal Behavioural Assessment Scale (NBAS) has been piloted. Previously this has only been done when the baby is 37-48 weeks gestation. The NBAS done with full-term babies has been shown to increase maternal self-confidence, improve paternal involvement, promote positive parent-infant interaction, and improve developmental outcome. The same techniques were used when observing the premature or sick baby when they come to the NICU. Twenty-one parents in the survey were asked the following questions about their baby during the baby's stay:

1) What is your baby like – his/her personality?
2) What does your baby like to do/look at?
3) How does your baby react to noise and light?
4) How does your baby react to handling?
5) What position does your baby like to be in?
6) How does your baby move between sleep and awake states?
7) How does your baby comfort him/herself?
8) Is your baby cuddly or not?
9) How can you tell that your baby knows you?
10) How does your baby show you he/she is trying to protect him/herself in order to get better?

The NBAS shows the baby's amazing abilities, such as turning to the parent's voice rather than a stranger's voice, tracking a moving object, the baby's reflexes, his ability to organise his sleep and awake states, and self-comfort. It produces a profile of the baby's personality.

The NBAS was carried out once or twice before discharge and twice after discharge. Results showed:

• 46% mothers noticed things about their baby they had not noticed before.
• 57% mothers felt they knew their baby better than before.
• 62% mothers said their needs and their baby's needs for emotional support were met.
• 57% mothers felt their baby benefited from having the NBAS.
• 100% mothers would recommend the NBAS to other parents.

Parents reported that this intervention was a positive experience and helped them to see all the positive things their baby could do, despite his or her medical problems; they felt less concerned about the future, and were more able to enjoy their baby; they felt reassured their baby was more responsive than they thought.

Taking your baby home from the neonatal unit

Parents are longing to take their baby home, but often feel anxious when they are told that their baby is ready to leave the neonatal unit. Most units will work out a plan for the discharge of the baby with the parents, and it may take several days or weeks until parents feel that they are emotionally ready. It may be helpful to keep in touch with the other parents who were in the neonatal unit, and also with the counsellor.

Some units have community neonatal sisters who will visit the parents and baby at home, especially if the babies are tube-feeding or on oxygen. Health visitors are often in touch with the mother after the baby is born early, and sometimes will visit her in the neonatal unit. Support from the beginning can be more beneficial as some health visitors do not know a great deal about premature babies and need to confer with the neonatal community nurses. There are community paediatric teams who also provide support.

At home with your baby

Some parents feel underconfident and scared when they find themselves at home alone with their baby without the security and support of the staff in the neonatal unit, and it might take some time to adjust. It can feel frightening and lonely. Once the health visitors and community nurses are no longer needed, parents often find they are depressed and it is difficult to find the support they need. Research shows that it is vital for these parents and babies to have ongoing monitoring, assessment and support from multi-disciplinary teams who can focus on parent-infant relationships. If the follow-up care is purely medical, many aspects of the parent-child relationship are left unsupported. Parents find that having groups with other parents who have had a similar experience to be very helpful, but currently they are hard to find. Parents have many feelings and questions that need resolution. One parent said 'I am convinced that this journey of reflection is one of a lifetime.'

Future research

Some studies are under way continuing to explore ways to improve parental wellbeing and infant development after very premature births.

Support for staff in neonatal units also needs to be improved as more babies are staying in neonatal units for longer periods. Provision for parents' comfort in neonatal units needs to be improved and parents' and babies' voices need to be heard. Taking care of the mental health of parents and infants and their relationships needs to be made a top priority in the provision of services. Long-term follow-up from multi-disciplinary teams in the community need to be available.

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