Around 84 in every 100,000 children in England now rely on a gastrostomy tube for long-term feeding, and the NHS spends over £200 million each year on commercial liquid formulas. Many families have started blending real food at home to feed their children through the tube, reporting better digestion and wellbeing. But there is no standard, evidence-based way to do this safely and equitably. Dietitians lack consistent training, and low-income families may struggle with the cost of fresh ingredients. Without a replicable intervention, clinical trials cannot compare home-blended foods against commercial formulas. This study aims to co-design a standardised “Real Foods” intervention with families and dietitians across three UK sites. Over two years, researchers will test its use and acceptability with 10–15 families, measure changes in gastrointestinal symptoms, and explore family experiences through scrapbooks and interviews. A further five families will pilot the refined intervention. If successful, the project will produce a replicable protocol ready for large-scale evaluation. That could shift NHS practice toward offering home-blended food as a safe, cost-saving option—but only if the intervention is designed to work for families on low incomes, not just those who can absorb the cost themselves.
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Background: The numbers of children living in the community with gastrostomy tube-feeding is increasing, a current estimate is 84 per 100,000 in England1. The NHS allocates over £200 million annually for commercial enteral formula2. A growing body of research suggests use of home-blended foods can improve digestive health, overall well-being, and have psychosocial benefits3-23. Use of home-blended foods transfers the cost to families saving the NHS money, but this could also be a barrier low-incomes families3,4,7. The European Society for Paediatric Gastroenterology, Hepatology, and Nutrition has emphasised a need for large, multicentre clinical trials to compare the benefits and risks of home-blended foods, with standard commercial enteral formulas24. However, efficacy of this approach is dependent on the food selections and practices of caregivers3. Furthermore, surveys of UK dietitians reveal variability in skills and confidence required25,26. A standardised and replicable Real Foods intervention is essential to ensure equitable implementation in clinical settings and to inform the design of future clinical trials. Aim: 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. Objectives: Co-design a clearly defined Real Foods intervention Use quantifiable tools to measure use and acceptability of the intervention Explore families experiences of the intervention using qualitative methods Synthesise and refine; pilot feasibility of the intervention and explore measures of digestive health and wellbeing Method: Design A two-year, three site, mixed-method study with four phases: Co-design of the intervention informed by: A rapid scoping literature review Mixed-method telephone survey of children s home enteral feeding dietitians at recruiting sites (n=10=14) Stakeholder consultations Measure use and acceptability using quantitative measures: Parent/carer evaluation using co-designed questionnaires Parent/carer reported changes in gastrointestinal symptoms using the PedQL gastrointestinal symptoms scale27. Cost Analysis Nutritional analysis of food diaries Explore families experiences of Real Foods using qualitative methods Free text comments in parent/carer evaluation questionnaires Documentation of experiences in scrapbooks (arts-based method28) In-depth qualitative family group interviews centred on scrapbooks Recruitment: Tube-fed children and young people 3-11 years, together with their families (n=10-15), will be identified by dietitians from existing caseloads. Low-income families will be purposefully included. In the final phase we will: Synthesise and refine the intervention through stakeholder engagement Pilot feasibility of the intervention with a further n=5 families Set research priorities and explore acceptability of measures of digestive health and wellbeing using a nominal group technique33 Analysis: Quantitative data will be analysed using descriptive statistics, Qualitative data will be analysed thematically. Timelines for delivery Duration 24 months starting 01/05/2025 Anticipated impact and Dissemination The primary impact will be the development of a replicable Real Foods intervention ready for scale evaluation within two years. Outputs will be disseminated via Online celebration event Newsletters/social media/videos/infographics Publications and Conference presentations
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