When a young patient’s life hangs in the balance, the last thing on the minds of stressed parents, families and patients would be to get involved in research. Or is it? Despite the turmoil, some brave families and children have volunteered to support clinicians in their research by taking part. Dr Padmanabhan Ramnarayan, Clinical Reader in Paediatric Critical Care in the Department of Surgery and Cancer and Honorary Consultant in Paediatric Intensive Care at Imperial College Healthcare NHS Trust and West London Children’s Healthcare, explains why.
I have been a children’s intensive care doctor for over 20 years, and for most of that time, I have been leading research that has involved critically ill children. My patients are young, their parents and families are super-stressed, and most of the treatments are given in an emergency – all of which seem like perfectly valid reasons to not involve sick children in research. Despite this, my experience is that parents and families are overwhelmingly in support of research. Why?
The evidence gap
Since children’s intensive care is a young speciality, much of our practice is ‘borrowed’ from adult intensive care or newborn intensive care. This is not ideal because our patients range from birth to 18 years of age, with diseases as diverse as asthma, respiratory infections, accidents and trauma, sepsis and brain injury. Without high-quality research to guide care, the treatments provided to sick children may not be the best or the most effective. Doctors and nurses, and parents and families, understand this. By agreeing to include their children in research studies, parents want to improve the care provided to future patients.
Children’s allergy specialist, Dr Robert Boyle, unpicks the evidence behind the value of allergy tests for children with eczema.
Around one in five children have eczema – and even mild cases can have a big impact on both the child and their family. For many, symptoms will come and go before they start primary school, but for others it can indicate the beginning of a genetic tendency to develop allergic conditions such as hay fever or asthma (or both).
We also know that children with eczema are more likely to develop food allergies, especially if the condition starts in the first few months of life and is severe. Often parents will make the allergy diagnosis themselves – at the sudden onset of vomiting, diarrhoea or rash after eating scrambled egg, for example.
This can be frightening, but doctors can usually easily confirm the cause of these immediate reactions by talking to the parents and offering a confirmatory allergy blood or skin prick test.
In the absence of such obvious physical reactions however, a different question sometimes arises for parents: “Is a food allergy contributing to my child’s eczema and would an allergy test help to find out?” (more…)
Dr Susanna Sakonidou writes on how the BUDS project is improving the experience for parents of babies in neonatal care with an app.
Alarms going off, doctors and nurses rushing across the ward, parents desperately trying to catch someone’s eye to get an update. The reality of having babies in neonatal care is undoubtedly traumatic for parents. As high as 35% of them can develop symptoms of post-traumatic stress disorder (1), which can in turn interfere with the process of baby-parent bonding (2).
Having a baby that requires neonatal care is more common than one might think. One in eight babies born in the UK are admitted to a neonatal unit and surveys show that parents struggle to adjust to this unfamiliar environment. Getting verbal updates about their babies is difficult, given how busy staff is dealing with emergencies on the unit. As a result, parents frequently feel excluded from their babies’ care. (more…)