Tailoring nutrition for children in intensive care

About the Project and the Involvement Opportunity
When kids are sick and in the intensive care unit, it’s important to make sure they get nutrition (energy, protein, and vitamins) that’s exactly right for them. It can be difficult to figure out exactly how much nutrition to give children when they are sick, as each child and situation is very different. It can also be hard to provide enough nutrition when kids are in the intensive care unit as feeds can often be missed (for example, when they need to fast for tests and therapies). Neither too much nor too little nutrition is good for very sick kids and figuring out the right amount (and doing our best to make sure they get it), will help children to get better faster.

At Perth Children’s Hospital (PCH) we are very fortunate to have a piece of equipment that tells us exactly what energy kids need, by measuring their breath. This helps dietitians make very accurate feeding plans for each child, especially when they need to be fed via a tube in their nose. We want to use this machine to guide nutrition for each child in the intensive care unit who is requiring breathing support. Additionally, we want to improve how good we are at getting nutrition in, by introducing new and improved tube feeding policies.

The investigation will focus on:

• the use of advanced technology to personalise nutrition in these children
• improved tube-feeding practices.

Shaping this project with the knowledge, experience and perspective of people with lived experience will create a rich, robust study with the overall goal of improving nutrition for sick kids in hospital.

About the Position
We want to involve consumers in all aspects of this research (designing the study details to writing up results and presenting in a paper) to ensure all perspectives have been considered.

Consumers in this role may:

• Attend project team meetings
• Review research materials (e.g., grant proposals, consent forms, surveys, questionnaires)
• Provide input on communication materials for participants or to the public
• Offer insights based on lived experience
• Assist with grant review or ethics submissions
• Contribute to the interpretation and communication of research findings
• Optional: Participate in public presentations or forums

What Skills or Experience Do I Need?

• Parents or carers who have cared for a child in intensive care who needed help to breathe using a breathing tube and machine (intubation and ventilation).
• Young adults (aged 16 and over) who have personal experience of being in intensive care and needing breathing support within the past 5 years.

How Long Am I Expected to Be Involved?
Flexible participation is supported. Meetings will be monthly for 1-2 hours.

Where Will Meetings Be Held?
Meetings can be online or in person at PCH or a location convenient for the consumer, whichever suits the consumer best.

What Support Is Offered?
An honorarium of $37.50 per hour is available for consumer involvement activities in line with CCI Program guidelines. Training and support provided by the Consumer and Community Involvement Program.