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Taking the lead from premature babies when it comes to their care

The stress premature babies experience in neonatal units can have lasting effects. But at University College London Hospital, nurses trained in the NIDCAP approach are guided by babies' cues and prioritise their comfort
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The stress premature babies experience in neonatal units can have lasting effects. But at University College London Hospital, nurses trained in the NIDCAP approach are guided by babies' cues and prioritise their comfort

William was born born three weeks ago at 26 weeks' gestation. He is in a high-dependency ward breathing with the help of a continuous positive airway pressure (CPAP) machine. On the whiteboard next to his incubator, a nurse has written 'minimal handling'.

Being in neonatal care is stressful for all babies, and the nurses have observed that William seems especially unsettled when they do his 'cares'.

Gillian Kennedy, a consultant speech and language therapist, is here to find out what William is telling those caring for him 'about the way we do things'. Watching his breathing closely,

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The stress premature babies experience in neonatal units can have lasting effects. But at University College London Hospital, nurses trained in the NIDCAP approach are guided by babies' cues and prioritise their comfort


NIDCAP care focuses on understanding and meeting each baby's individual needs. Picture: iStock

William was born born three weeks ago at 26 weeks' gestation. He is in a high-dependency ward breathing with the help of a continuous positive airway pressure (CPAP) machine. On the whiteboard next to his incubator, a nurse has written 'minimal handling'.

Being in neonatal care is stressful for all babies, and the nurses have observed that William seems especially unsettled when they do his 'cares'.

Gillian Kennedy, a consultant speech and language therapist, is here to find out what William is telling those caring for him 'about the way we do things'. Watching his breathing closely, she observes patterns of shallow breaths followed by a faster breath, and then a shuddery stretch. She points out that William is using his movements to take more effective breaths. He needs more time to adjust to being touched. He may be experiencing discomfort connected to his breathing or digestion, or caused by overstimulation: too much noise, light and physical contact.

Person-centred care

Here at University College London Hospital (UCLH)'s neonatal unit, Ms Kennedy is involved in what she hopes will become a revolution in NHS neonatal care.

She is the trainer at the new British training centre at UCLH for the Newborn Individualized Developmental Care and Assessment Program (NIDCAP). Originally developed in the United States in the 1970s (see box), NIDCAP is a person-centred neonatal treatment that aims to give a voice to the most fragile of babies.

An increasing body of research suggests that the harsh neonatal unit experience can affect children's neurological development, potentially causing difficulties with sensory processing, behaviour and learning as they grow.

'The neonatal unit is very alien,' says Ms Kennedy. Premature babies who should still be in utero aren't physically ready to process the sensory overload of the typical neonatal ward, she says.

NIDCAP tries to make the experience less stressful by reading a baby's cues and supporting each infant as an individual. NIDCAP nurses treat babies as if they are older children who are able to speak.

Baby's 'permission'

A NIDCAP nurse gains a baby's 'permission' before a procedure by waiting, wherever possible, until the baby wakes naturally, giving them time to settle, and softly explaining what is about to happen. They move the baby slowly and smoothly, adjusting to the infant's responses and holding them for as long as necessary to give comfort before, during and after a procedure.

UCLH staff sister and neonatal nurse educator Jenny Montague says the NIDCAP training 'gives you much more to offer each family. It makes your nursing more positive and proactive'.  

Ms Montague acknowledges that the approach can be challenging. 'For some of us it comes instinctively, but for others it doesn't. A lot of nursing jobs are very task-oriented, and nurses like to do things quickly, but babies don't always like that. When a baby is holding their hand out he might be asking "Where am I?" or saying "I don't like this, go away".

'Move slowly and see how he responds to you when you go at his pace. Yes, there are jobs that need to be done, but we do them in a developmentally supportive way, and of course that takes longer, but this is important: we're looking at brain development.'

Ultimately, Ms Montague says, it's much easier to look after a baby if you approach their care in this way. Under NIDCAP, one nurse or doctor might focus on performing a procedure while another nurse focuses completely on comforting the baby.

UCLH consultant neonatologist Judith Meek says NIDCAP 'sounds woolly, but it is scientific'.

Brain development

'Following a baby's cues gives them the best neurodevelopmental outcome. If you understand and nurture these babies, they will have a better quality of life down the line.'

Babies treated under NIDCAP come off ventilators faster, have a reduced chance of chronic lung disease, and are discharged from neonatal units earlier, research has found.

'There is hard evidence showing babies' MRIs and EEGs are very different when they're cared for using this approach,' Ms Kennedy says. 'At follow-up, the child has much more organised behaviour, especially in terms of visual-spatial ability and motor planning.'

A study published in BMC Pediatrics in 2013 evaluated nine-year-olds who had been born preterm and with severe intrauterine growth restriction. It found that those who had received NIDCAP treatment had better executive function and significantly larger cerebella.

At another high-dependency incubator, Ms Kennedy notices a 31-week-old girl's legs flailing. She arranges for an extra muslin blanket to gently contain them – or 'snuggle her in', as she puts it – while staff nurse Brinda Balaranjan places both hands on the baby to soothe her. The baby's blood oxygen saturation rises as she calms.

Involving parents

NIDCAP provides comfort to parents, too, by making them a central part of their baby's care. If a parent feels their baby is behaving unusually, or wants to wait until the baby is calmer before starting a procedure, a NIDCAP nurse will take this input seriously.

Parents are encouraged to participate in their baby's care and to give as much 'kangaroo care' (cuddling their baby skin to skin) as possible.

Sarah O'Shea is mother to William and his twin, Evangeline. 'Ultimately you're entrusting your babies to someone else to keep them alive,' she says. 'So to have people who are kind and caring and responding to your baby's needs is priceless. And to involve us, as parents, helps enormously. To know we are listened to is amazing.'

The NIDCAP training centre at UCLH, run by a team including consultant neonatologist Neil Marlow and NIDCAP pioneer Inga Warren, as well as Ms Kennedy, was launched in March.

It aims to build on existing training programmes to increase the number of NIDCAP-trained nurses and doctors in the UK, and to fund NIDCAP professionals to observe and assist babies and develop care plans.

The new centre has been partially funded by Nicola Rushton and Jasper Warwick, parents of ten-year-old Alexandra Warwick, who was born at 24 weeks' gestation and treated in the neonatal unit at UCLH.

Mr Warwick believes NIDCAP had a big impact on Alexandra's development. 'It felt right,' he says. 'You can't recreate the womb, but you can't treat a child like a lab animal. The care Alexandra received was baby-centric; it reduced stimulation and calmed her, and it helped me bond with my daughter.'

Today, Alexandra is doing well, and her parents describe her as kind, calm and resilient.

Improving lives 

'Nicola and Jasper donated a significant sum for NIDCAP education,' says Ms Kennedy. The rest of the centre's income derives from other donations and income from training fees.

NIDCAP training is expanding, she says, with 'hot spots' in Sheffield, Bristol, Bath, London and the north east. However, she says a limited number of neonatal units in the UK have a NIDCAP professional, and it is still 'lagging behind' other countries.

But the new NIDCAP centre's director, Neil Marlow, believes NHS neonatal care is evolving into a new era: 'When we started, we were trying to save lives. We've got good at that. What we now need to do is look at the quality of that survival.'

One in nine British babies are now born premature, and by training more nurses and doctors in NIDCAP, Ms Kennedy hopes to improve their lives. 'I would like to see NIDCAP in every neonatal unit,' she says. 

NIDCAP: The basics of developmental care for premature babies

  • Spend time getting to know the baby as an individual and try to learn from their behaviour. What would they like you to do to support them?
  • Wait. Whenever possible, provide care in line with the baby's natural timescale, rather than imposing a schedule.
  • Move and touch the baby slowly and gently and give them time to adjust to any transition.
  • Reduce the sensory impact of the ward. Keep noise, bright light and sudden touch to a minimum.
  • Talk to the baby, hold them and tell them what you are doing. Remember this is a person.
  • Treat parents as equal partners in care and encourage them to do as much with the baby as possible. Do procedures with the parent holding the baby or close to them, when possible. Ideally the parent should be able to stay overnight near the baby.
  • Have one person dedicated solely to comforting the baby during procedures.

The birth of NIDCAP

Taking care of neonates' emotional and sensory needs as a vital complement to their medical care sounds obvious, but NIDCAP was met with scepticism when it was first developed in mid-1970s America.

Heidelise Als, then a graduate student at the University of Pennsylvania and today a Harvard Medical School professor based at Boston Children's Hospital, became fascinated by the work of paediatrician Tom Berry Brazelton. Dr Brazelton observed infant behavior in all its complexity to form a behavioural 'portrait' of each individual child. Als then applied these attachment theory principles to premature babies, and NIDCAP was born.

It was easily accepted in Europe, especially Scandinavia, and in developing countries where mothers commonly 'room in' with their babies. But British and American hospitals were not convinced. It took until 1994 for NIDCAP to be introduced in the NHS, where it was rolled out at St Mary's Hospital, London, by occupational therapist Inga Warren.

Gillian Kennedy was one of the first to train in NIDCAP under Ms Warren, and began practising it when she started at UCLH in the late 1990s. She was awarded an OBE in 2015 for her work.


Olivia Gordon is a freelance health writer

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