Providing better information for parents and babies in neonatal intensive care

Parents whose baby is in a neonatal intensive care unit (NICU) usually are under a lot of stress. Much of this stress is unavoidable, but in some cases parents are under more stress than necessary because they do not understand what is happening to their baby. Although NICU medical staff of course do their best to keep parents informed, some parents may not fully understand the terminology used by doctors and nurses (and may be reluctant to admit this), and also some parents may not be able to physically visit the NICU and talk to medical staf because of other commitments such as caring for other children.In a PhD project associated with the EPSRC-funded BabyTalk project, we have developed a software system, BT-Family, which produces summaries of a baby's status for parents. BT-Family builds on the award-winning BabyLink parent-information system used in the Edinburgh NICU, primarily by using artificial intelligence and natural language generation technology to automatically analyse and summarise the information in the baby's electronic patient record.BT-Family has been developed in consultation with parents, but it has not actually been deployed and evaluated by parents; this was not possible in the time frame of the PhD project. The goal of this project is to enhance BT-Family and deploy it in the wild where parents of NICU babies can use it, and evaluate how useful it is and also find out how parents believe the system can be improved.Although our focus in this project is specifically on parents of NICU babies, if this project is successful we believe that our ideas can be generalised to other situations where a parent or carer is responsible for someone in hospital. We believe that providing better information to parents and carers can reduce stress in many contexts (not just NICU), and that this is a major opportunity to use advanced IT to enhance the quality of life of people in the unfortunate position of having a child or dependent in hospital.

The main beneficiaries of our research will be parents of babies in neonatal intensive care; our technology will help them cope with a very stressful situation. Since high stress after birth can adversely impact long-term parenting, our technology will also help the babies, and indeed other children of the parents. In general, while considerable research has been done on using advanced IT to help hospital patients, much less has been done on supporting parents and carers (and indeed friends and family more generally). We believe this is a significant opportunity here to genuinely help people in the difficult position of having a very sick baby in hospital. In the longer term, if we are successful we believe our ideas could be applied in many other contexts (besides NICU) where a parent or carer is responsible for someone in hospital; indeed we have already been contacted by staff from a pediatric intensive care unit who are interested in our ideas.