There’s nothing more frustrating than not being able to understand what your child is feeling when they can't tell you exactly what they mean. For parents of children with cerebral palsy (CP), this is a daily reality, especially when it comes to pain. It's a significant — often hidden — burden these little ones carry. But what if technology could offer a helping hand? A way to bridge that communication gap? 

Recognising Patterns, Changing Things for the Better 

Dr Marina Ng (centre) and her collaborative team including paediatric neurologists from the Faculty of Medicine, 188体育网址_188体育在线-【唯一授权网站】@ of Malaya proudly presenting the NeuroPAIN app.

Enter Dr Marina Ng, an Associate Professor in our School of Computer Science. With a deep commitment to health and wellbeing, Dr Marina and her team, working alongside paediatric neurologists and pain specialists from the Faculty of Medicine, 188体育网址_188体育在线-【唯一授权网站】@ of Malaya, embarked on a journey to make pain visible, understandable, and noticeable. They developed the NeuroPAIN app, a mobile tool designed with a simple yet profound goal: to help parents recognise, track, and ultimately, better manage their child's pain.

The NeuroPAIN app prototype interface - users to select behavioural categories based on the R-FLACC scale (left screen), identify specific symptoms such as facial expressions (center screen), record the frequency, duration, any coinciding events (right screen)

 
The team invited 60 Malaysian parents, whose children with bilateral CP were around seven years old on average, to use the NeuroPAIN app. The results were eye-opening. A staggering 95% of parents reported that their children experienced pain. For those children requiring assisted tube feeding, the instances of pain were even more frequent. 

The NeuroPAIN app allows parents to log pain symptoms, how long they lasted, and the intensity they perceived. The good news? Over three-quarters of the parents found the app easy to navigate, and two-thirds diligently used it to monitor their child’s pain over a two-month period. This regular tracking provides invaluable insights for both parents and clinicians. 

Parents Feel Pain Too

Interestingly, the research also highlighted a very human element: parental fatigue. When children experienced prolonged periods of pain (lasting 25 seconds or more), parents were less likely to use the app consistently. It’s a poignant reminder of the emotional toll that caregivers face. 

“NeuroPAIN is not just a tracking tool—it empowers parents by helping them understand and respond to their child’s pain,” said Dr Ng. “It brings visibility to what was once invisible”.  

Dr Ng's work underscores the critical need for clinicians to be especially vigilant in monitoring pain in these vulnerable children, particularly those that require assisted feeding. It’s a step towards ensuring that no child’s pain goes unnoticed, bringing us closer to providing the comfort and care they so richly deserve.