Study exposes burden on carers of children with feeding tubes

PhD candidate and dietitian Claire Reilly from UQ’s School of Health and Rehabilitation Sciences mapped the journey of 30 families, with many parents describing feeling overwhelmed and underprepared to manage the often-complex care on their own.

“Many of the families we worked with felt isolated and emotionally drained, particularly those in regional areas where they faced extra challenges due to limited access to care,” Ms Reilly said.

“One mother described a routine of planning, preparing, feeding and cleaning on constant repeat for a child requiring 6 tube feeds per day.

“Working, day care or even babysitting may not be an option for these families.”

Ms Reilly said children who were hospitalised had a 1 in 4 chance of needing temporary tube feeding, and a 1 in 10 chance of being discharged home with the tube.

“The long, thin plastic tube is inserted through the child’s nose and into the stomach, so they can receive extra nutrition, and sometimes medication, if they are not able to eat or drink enough to grow,” Ms Reilly said.

“Keeping the tube in place is another concern for carers because if it’s pulled out or dislodged during play or sleep, that’s likely to be a trip to the emergency department for the tube to be replaced.

“Many carers are not confident to replace the tube themselves at home because they’re frightened, they might insert it into the child’s lungs, which can be fatal.”

As a dietitian for 20 years, Ms Reilly had prescribed thousands of temporary feeding tubes, and her PhD investigated how these children and their families were cared for after they left hospital.

“The study has clearly shown the need for better ongoing support and education for families after discharge,” Ms Reilly said.

“Even as a clinician, I was unaware of the problems families faced with some carers staying up all night in case tubing wrapped around the child’s neck, and others believing they had to be by their children’s sides while hours-long tube feeds were in progress. 

“It broke my heart to hear about these difficulties.

“In fact, you can just take the feeding pump and put it into a backpack and walk around with it, go to school or do other things.”

Claire Reilly won UQ’s 2024 Three Minute Thesis (3MT) final, where her research was recognised for its real-world relevance and powerful storytelling.

The 4-part investigation has been published in Nutrition in Clinical Practice.