James* had a tough start: he was born prematurely, at 33 weeks of gestation, and spent the first 10 weeks of his life in a neonatal intensive care unit.

But James was lucky, too: by the age of 4, he was developing well and showing no signs of any of the difficulties that can be associated with a preterm birth.

And so his parents faced a difficult decision when the time came to send him to school. Should they let the school know about his difficult start to life?

“My husband definitely feels that unless there are specific learning problems, the school does not need to be informed, as it may result in different treatment,” says James’ mother, Claire Clarke*. “I disagree. I feel that preterm children are often on the back foot, as it were. If the school were aware that a child was premature and noticed learning difficulties, it might assist them in helping the child in the best way.

“As I pointed out to my husband, most learning difficulties, I assume, are picked up at school, so how would we know if his being preterm was relevant to the school or not?”

This is a discussion more and more parents are having in the UK: thanks to recent medical advancements, increasing numbers of children now survive being born preterm. Unfortunately, two in three of the children born extremely preterm (before 28 weeks) will experience learning difficulties and need help at school. Those born between 28 weeks and 37 weeks are also at higher risk of learning challenges.

In an effort to give these children the best chance at school, you might assume that informing teachers of the risk factor would be helpful.

But are schools set up to do anything useful with that information? The evidence suggests that, currently, they are not. Moreover, the broad array of potential challenges a child born prematurely may face raises questions about how useful the “preterm” label actually might be.

It’s a complex area, but is there any consensus about how schools could tackle it?

That schools are going to be forced into at least considering the question seems inevitable. Each year in the UK, around 60,000 babies are born preterm (before 37 weeks of gestation are completed), which is about 8 per cent of all babies born. This means that in the average primary school class, there will be two to three children who have been born preterm.

Of those children, the numbers surviving after being born extremely preterm (before 28 completed weeks of gestation) are rising. According to a 2012 study published in the British Medical Journal, survival rates for babies born between 22 and 26 weeks of gestation rose from 40 per cent to 53 per cent between 1995 and 2006. In the time since, that figure will have likely risen further, due to advances in technology and better informed care. Premature birth charity Tommy’s reports that the chance of survival at 25 weeks is around 66 per cent and at 26 weeks it is around 77 per cent.

Risk factor, not diagnosis

The common perception is that children born early will always experience developmental and learning challenges, but that’s not the case.

Samantha Johnson, a developmental psychologist and professor in the department of health sciences at the University of Leicester, has been following the development of babies born preterm for more than 15 years. She believes that one of the most important things for teachers to understand about the effects of preterm birth on a child’s education is that, although prematurity is a “risk factor” for difficulties later in life, it is certainly not “a diagnosis”.

“Not every preterm baby will go on to have difficulties,” Johnson points out.

She adds that how premature a baby might be does not necessarily determine how much difficulty that child may have, either.

“Some babies born just a couple of weeks early might have severe difficulties and then you have other babies born extremely preterm at 23 or 24 weeks of gestation who might have no problems at all,” she says.

That said, Johnson concedes that the earlier a baby is born, the higher the risk that they’ll have difficulties and the more likely it is that those difficulties will be severe.

So schools are going to see more children coming through the gates with a higher risk of learning difficulties due to preterm birth. At least being aware of that fact seems sensible.

Is there any indication of what those difficulties may be? Johnson says that research over the past 20 to 30 years has begun to map out what challenges children born preterm are likely to experience.

“We are seeing a particular pattern of difficulty that is emerging, that might be described as a ‘preterm phenotype’,” says Johnson. “By far the most common areas of difficulty are in the areas of cognition, learning and social/emotional outcomes, which of course are more subtle difficulties, but those kinds of things are likely to have a profound effect on children’s performance at school.”

In particular, Johnson says, there is a specific “cluster” of challenges that tend to appear in children born preterm. These include: difficulties with working memory, slower processing speed, executive function difficulties, sensory or motor difficulties and difficulties with visuospatial awareness or visuomotor integration.

Unfortunately, Johnson says, these challenges can sometimes go unnoticed, as children born preterm are also more likely to be quiet and reserved.

“These are children in the classroom who are likely to be potentially quieter, more anxious, shy, withdrawn, but not really disruptive children.

“It means that they might not come to the teacher’s attention as much as other children with behavioural or emotional problems. And so their difficulties might be harder to detect,” she explains.

Another complication is that the difficulties that preterm children tend to experience overlap with those experienced by children with diagnoses for some of the most common special educational needs that teachers would come across in the classroom, such as ADHD and autism. Indeed, it is possible that preterm children can develop these conditions, too. However, when they do, their profile can often be subtly different, requiring tailored approaches and interventions, Johnson says.

“Some of the difficulties the children have might present slightly differently to other children with those difficulties. So, for instance, in terms of social and emotional outcomes, there seems to be a high risk for attention problems or ADHD in children born preterm compared with children born at term. But these tend to be primarily the risk of difficulties with inattention, rather than hyperactivity or impulsivity.”

Clearly, spotting some of these challenges is going to be tricky. As a result, Johnson does feel schools should have information about whether a child was born preterm so teachers can look out for signs of an issue.

Margaret Mulholland agrees. She is director of development and research at Swiss Cottage School, a special school for children with complex learning difficulties, emotional, behavioural and communication difficulties - one in eight children born extremely preterm go to special school.

Swiss Cottage always receives information about the birth dates of pupils, along with their medical history - something that is far more common in special schools, or for pupils with education, health and care plans (EHCPs). But this information would be useful for all schools, Mulholland argues.

“It’s really important to know each child in your class,” she explains. “Each child has a ‘package’ of needs around them. It’s about trying to put together that jigsaw puzzle around that learner.”

Having the “preterm label sitting on SIMS” would therefore be helpful, she adds, as this is just one more piece of the puzzle; it would put preterm pupils “on the radar” for teachers.

“If we are aware of the potential barriers to learning for a particular pupil then we can better work to tackle those,” she says.

The trouble is, knowing a child may be at risk of difficulties due to being born preterm and having a research-backed intervention, one teachers are trained in, to support that child ready to go, are two very different things.

Currently, the evidence suggests that telling a school a child was born preterm would do little to bring appropriate support into play.

For a study that was published in 2015, Johnson surveyed almost 600 teachers and over 200 education psychologists in the UK to find out what they knew about the long-term outcomes for children born preterm and what their educational needs might be. Perhaps unsurprisingly, the study found that teachers had significantly lower knowledge scores than educational psychologists, with teachers’ poorest areas of knowledge related to the most frequent adverse outcomes following preterm birth. The study also revealed that only 16 per cent of teachers had received any training about preterm birth, and just 14 per cent felt the training they received had been sufficient.

This lack of knowledge is a real problem, says Barry Carpenter, who is professor in mental health in education at Oxford Brookes University, and was previously director of the now-completed Children with Complex Learning Difficulties and Disabilities research project.

“We still don’t have the tools in our toolkit as teachers to respond to the profile of needs of some of these children,” Carpenter says.

Do the maths

But are there tools that have been proven to work for those children born preterm and who experience difficulties in school? Carpenter’s research has shown that preterm children often experience particular difficulties with maths - he theorises that this could be down to the fact that the parietal lobe - the area of the brain that deals with numeracy and mathematical computation - may not have fully developed by the time the child is born.

Maths has likewise been an area of concern for Lucy Cragg, associate professor of psychology at the University of Nottingham. She is part of a team, led by Johnson, that is creating an online resource aimed at providing teachers with information and strategies to support preterm pupils in the classroom (they are hoping to make the resource available in early 2019). Support in maths has been a focus for the team.

“Maths is a particular area of difficulty for children born preterm precisely because of their problems with general thinking skills,” Cragg says. “Our research in the Preterm Infants’ Skills in Mathematics (PRISM) project has found that children born preterm have equivalent numerical representations to their term-born peers, but that it’s their difficulties with working memory and visuospatial skills that underpin their lower achievement in maths.”

However, Carpenter points out that when teachers understand exactly what is causing the difficulties of a particular pupil, they will be able to identify the interventions and teaching strategies that will help them the most and this achievement gap will close.

For instance, Carpenter has had success in using Numicon resources with preterm children who struggle in maths lessons. He has found that these pupils tend to respond well to this, as it is a more “tangible, tactile approach”.

Cragg, meanwhile, advocates using strategies to address the general executive function problems that preterm children can experience.

“Teachers can support children with working memory, processing speed and attention difficulties by giving short, single-step instructions, checking understanding before starting a task, and working with individuals to develop their own strategies for when sequences of instructions have to be followed. Waiting for a few moments before eliciting a response to a question is another useful strategy to ensure that children with slower processing speed also have the chance to answer,” she says.

Of course, for teachers to be able to adapt the strategies they use in this way, there needs to be a degree of flexibility in how they can teach and that is not always the case.

Another possible way of supporting those preterm children who do experience challenges may be delaying their entrance into the education system, says Dr David Odd, honorary senior lecturer at the University of Bristol and consultant neonatologist at Southmead Hospital, who has previously published papers looking at whether delaying school entry helps preterm children.

“We have previously identified that a more appropriate year of schooling may well help a lot of these infants,” Odd says. “You could call it delay, but it’s actually the more appropriate year for them, because they aren’t as old as we think they are and so they are being put into school a year too early.”

Yet Odd’s most recent research paper, published this year, has revealed that there appears to be a group of pupils born preterm who are able to “catch up” to their peers academically - regardless of whether their entry to school was delayed.

“What we found in the paper was that while they still don’t perform at quite the same level as term infants, they do demonstrate catch-up and that seems to occur between their key stage 1 and their key stage 2 measures. So by the time they get to KS2 there’s a big increase in how well they are doing compared to how you think they would be doing, given their KS1 scores.”

Johnson, likewise, agrees that the research around the benefits of delaying start dates is “inconclusive”.

“We don’t really know whether or not delaying school entry would be beneficial for children born preterm,” she says. “We did do some work funded by the Nuffield Foundation in which we used some data from Germany to look at delayed school entry and we found that for children who delayed school entry, there was no evidence of an advantage at the end of Year 1 in teacher ratings of academic performance, despite them being older. And at age 8, the preterm children who delayed entry had poorer scores for reading, writing, maths and attention.”

Of course, there will be some who will argue that drawing attention to the fact that a child has been born preterm - whether through delaying their start date, or simply labelling them on school systems - is not useful at all. For those born preterm who show no signs of learning challenges, there is a risk - as James’ Dad felt - that the child may be treated differently for no reason. Lower expectations, perhaps, or a stigma that would be tough to shake off.

Going beyond the label

Advocates, though, argue this would be a result of poor training for teachers, not something inherently wrong with the label.

And still others argue the challenges these children can face will be loosely served by a “preterm” label. Certainly, many special schools argue for a “label-free” approach, where assessments of individual pupils’ abilities give a more accurate path to intervention than an over-arching diagnosis. The authors of the 2 November Tes feature on SEND (“Look beyond the label”) certainly found in their academic studies that diagnostic labels were poor predictors of intervention needs.

Would it not be better to just judge an individual child, not try and react to a label?

Those academics working with preterm children, and teachers like Mulholland, still feel the label is useful and that there is no reason you cannot do both: assess the child but have the steer of the pre-term identification, too. The label, they believe, is the best way for schools to improve support as it should increase knowledge and awareness among teaching staff about the potential needs of preterm children and be a starting point for intervention if it is needed - part of the puzzle, as Mulholland termed it. It could explain some behaviours or challenges that a teacher may interpret as laziness, wilful inattention or poor behaviour, too.

For the label to be effective, though, a more joined-up approach between medical researchers and education professionals is needed, says Odd.

“What this calls for is greater collaboration between the neonatal and the paediatric services and those providing education. There’s a lot of really good work being done by both groups here and we may be able to join and bring expertise to that conversation for this very specific group of children with extra needs,” he explains.

Teacher training has to be a part of the picture, adds Mulholland, but that doesn’t necessarily mean that trainees - who are already overwhelmed by information - need to become experts in every possible disorder that they might encounter. Instead, she says, it’s about becoming “an expert in your pupils” and learning to tailor your teaching to suit them, coupled with knowing about where to find that expert knowledge about particular conditions (through resources like Johnson’s) as and when you need it.

Carpenter believes schools should already be asking for information about preterm births.

“There needs to be a question on the admissions form of every school, which says: ‘Is there anything in the birth history of this child that we need to know?’” he says. “It’s not an invasive question. And if parents don’t want to answer it, they won’t answer it, but it’s about their child having the best education. If I don’t know the facts, then I have to educate in the dark.

“Society really needs to stop celebrating just the medical miracle and say, yep, that’s great, that child has survived, but eventually we’ve got a whole child we have yet to support.

James’ mother certainly agrees with Carpenter on this point. In the end, she decided to disclose James’ birth history to the school for the reasons set out in this feature. And she has no regrets about doing so.

“I wouldn’t want James to feel singled out in any way,” she says. “However, some children may need that extra support at school and if their background is known it can only help the teaching staff and, in turn, your child.”

Helen Amass is deputy commissioning editor for Tes. She tweets at @Helen_Amass

*Names have been changed

Definitions of preterm birth

A baby is considered to be full-term at between 37 and 40 weeks of gestation. Anything below 37 weeks is considered to be preterm, as defined by the World Health Organisation.

Within the preterm category, there are subcategories, based on the length of gestation:

• Moderate to late preterm (32 to 37 weeks);

• Very preterm (28 to 32 weeks);

• Extremely preterm (less than 28 weeks).

(Source: http://www.who.int/news-room/fact-sheets/detail/preterm-birth)