Real Family food for children (3-11 years) who require Artificial Long-term tube-Feeding; an Observational Outpatient Dietetic Study

In this study we aim to create a clear way for families to start using real foods for gastrostomy tube-feeding. Gastrostomy tube-feeding is when a small tube is inserted through the abdomen into the stomach, directly. It is for children and young people who cannot eat or drink normally due to medical conditions like difficulty swallowing, developmental issues, or chronic illnesses. Usually, doctors prescribe company-made liquid nutrition, but more families are choosing to home blend their own 'Real Foods'.

Blending food can make positive changes to digestion and overall health but we do not currently understand why. Families prefer it because it is more natural and less like taking medicine. Experts want large trials to compare it with company-made liquid nutrition. However, this is tricky because families have different ways of doing it, and success depends on what families choose and how they make it. Blending food at home might be harder for families with money problems, limited nutrition knowledge and limited cooking skills. It is also important to know how children and young people themselves feel about it.

In this study, we will work with families who already blend food at home, to make a program dietitians and other health professionals can use to help other families. We will invite 10-15 families of tube-fed children (age 3-11 years) in Nottinghamshire, Leicestershire, and Warwickshire to try the program for three months. We will include families with low income and low parent education. Families will be provided with blenders and kitchen equipment as well as training and support. Parents/carers will fill out surveys, answer health questions, keep food diaries, and share recipes. Our play specialist will provide a scrapbook for the families to record their experiences. Using arts helps children and young people express themselves. After three months, we will ask families about their experiences in a recorded interview. At the end of the study, families can choose to keep using home blended foods or go back to their old plan. We will invite the families who took part to help us review and improve the program before inviting
another five families to try it.

Our group of parents and carers will be at the centre of the research the whole way through, helping design the program, look at the results, refine it and tell others what we find out. We will share what we find through articles, talks, social media and a celebration event. The parents and carers who joined in will also help us plan our next study which will try to understand why and how real foods can improve digestive health and wellbeing and understand what might be missing from the company-made liquid nutrition.

To co-design, and explore use and acceptability of an intervention, using real foods, for children aged 3-11 years who are long-term tube fed in the UK community setting and to explore measures of digestive health and wellbeing for a future clinical trial.