New research with families who have chosen blended diet for their tube-fed loved ones over commercial enteral formula, aims to improve clinical practice around this emerging – and emotive - area of healthcare.
Led by Professor Jane Coad and Dr Sarah Durnan from the Centre for Children and Young People’s Health Research, University of Nottingham, and sponsored by medical device company Vygon UK, the research was launched at a recent Vygon Gastrostomy Paediatric event.
In the UK, the number of people who are long-term, home enterally tube-fed – commonly referred to as HETF - has been steadily increasing since the mid-1980s. In recent years, the blending of real foods with liquid to be given through an enteral feeding tube has gained popularity, driven by the families and carers of tube-fed children.
While the British Dietetic Association (BDA) published a Practice Toolkit aimed at healthcare professionals in 2021, there remains insufficient resource for families.
The event brought together parents and families who have fought for the right to feed blended diet to their children, alongside the study authors and clinicians, to discuss the findings of the research, entitled Food for Feeding Tubes: a BLended ENteral Diet Study (BLENDS).
Children’s nurse and leading academic Professor Jane Coad, principal investigator of the study, explained: “This research is important to the families who choose to use blended diet; we listened to them and gave them a voice.
“Blended diet may not be for every family, therefore it’s important that informed choices are made in partnership with healthcare professionals. I hope that we have a health service where every family that wants to use blended diet – whether ad hoc, at weekends or 24/7 – can be supported, without healthcare professionals being concerned about doing so.”
Dr. Sarah Durnan, co-investigator, added: “What we want people to take away from this study is that it is possible to feed blended diet safely. There are many families that are using it, supported by health professionals, and it can be life-changing.
“When the first BDA policy was published in 2013 there were concerns about nutritional adequacy, tube blockage and micronutrient content, but we don’t experience those issues in clinical practice or in our research. We hope these resources will bridge that gap, increase confidence among professionals and provide evidence-based information for families to navigate these choices.”
Lesley Rogers, a mother who uses blended diet, described how her daughter Ruby will enjoy a family meal, exactly what any person would eat - such as spaghetti bolognaise, with added liquid and fats to ensure she’s getting the right nutrition. Despite ‘obstacles’ being put in her way, and a ‘difficult and stressful journey with little support’ Lesley has blended real foods for Ruby for 13 years.
The BLENDS study launch took place at gastrostomy event in London in late 2023. It was one of a number of gastrostomy workshops organised by Vygon UK to help train healthcare workers, with almost £5,000 in funds raised from attendees being donated to charity.
The 2023 charity recipient was PINNT, a national, independent non-profit providing support and understanding to hundreds of adults and children and their families adapting to life on home artificial nutrition. For more details on PINNT visit: https://pinnt.com/Home.aspx