A study of 2,000 UK adults commissioned by Nestlé Health Science found nearly a third (32%) have not heard of the term “tube feeding”.
6% of those surveyed – equivalent to 4 million people if representative of the whole UK population – think that tube feeding is when someone is forced to eat because they refuse to themselves. Many more assume tube feeding is the result of a terminal illness, breathing problems or catching COVID-19.
Interestingly, over a quarter (27%) of Brits think a person who is tube fed can’t eat in public. Other perceived limitations of tube feeding include not being able to drive (19%), not being able to work (16%) and not being able to take part in physical activity (9%).
When it comes to tube feeding specifics, over one in twenty (6%) believe there is only one way to tube feed, and one in five (21%) claim tube fed individuals can have only ready-made tube feed.
The research was commissioned by Talking Tube Feeding, a website that exists to support those tube fed by empowering choice and driving awareness. Talking Tube Feeding is a Nestlé Health Science initiative, created with healthcare professionals and tube feeding families.
A Talking Tube Feeding spokesperson, Annina Whipp (Specialist Paediatric Dietitian), said: “The research highlights some surprising findings towards the general public’s awareness and preconception on the practicalities and indications of tube feeding. We hope by gathering the research we can help educate the public on the various routes and methods of tube feeding and emphasise that tube feeding does not have to negatively impact a person’s quality of life. With evidence-based guidance and support from healthcare professionals, alongside valuable resources, including the Talking Tube Feeding website, individuals requiring tube feeding can thrive.”
Despite our preconceptions about tube feeding, nearly two in five (38%) people say they know someone who has been tube fed.
Tube feeding, the process of supplying nutrients to people who are unable to eat or drink orally via a tube through the nose or directly into the stomach, supports on average 40,000 adults and children in the UK .
The research, which marks Feeding Tube Awareness Week (6-10th February 2023), also found demand for a greater understanding of tube feeding, as nearly a quarter of people (24%) say they’d like to ask someone why they are tube fed.
Practically, 28% would like to ask a tube feeder if there is anything they need to be aware of when around someone who tube feeds, or on a more emotional level, if tube feeding has affected their self-confidence (12%).
Yet knowing how to broach these conversations is key, as 13% would like to ask someone who tube feeds questions about tube feeding but wouldn’t feel comfortable doing so.
If stood in the shoes of someone who tube feeds, 51% expect the effect on their self-esteem would be the worst thing about tube feeding. Other concerns include how people would look at them (43%) and the effect it would have on how they enjoy food (47%).
Faye Bingham, a 26-year-old tube feeder from Kidderminster, said: “Having a feeding tube can affect your self-esteem; it did for me until I learnt to love mine – after all, it keeps me alive and increases my quality of life. This was the main reason I set up a small business making adapted feeding tube accessories, so that I can show off my style and personality in my medical device. It takes time to set up my feed, ensuring I have adequate nutrition and keep hydrated, so having an adapted backpack for on-the-go is amazing.
“As humans, we are naturally curious when something appears ‘out of the norm’. I love it when people politely ask questions about my tube rather than giving awkward stares or quick glances. Even if I can’t join in with eating and drinking, I like to be invited to social events that may revolve around food. It’s not awkward for me, and having a feeding tube doesn’t affect my and other tube feeders’ ability to take part. My feeding tube has allowed me to stay fit and healthy, without the constant need for hospital input. This means I can contribute to society, join in with friends and have enough energy to do exciting things like holidays, day trips and sport. My feeding tube is not a negative; it has changed my life for the better."
Despite our assumptions, 29% of adults deem tube feeders to be brave and 28% would make a conscious effort to involve a tube fed person if in a social group.
A further 9% have faith in society as being kind and considerate of those who tube feed, and 17% even believe there is no stigma attached to tube feeding.
1. Survey carried out by Talking Tube Feeding (a Nestlé Health Science initiative), January 2023, surveying 2,000 UK adults
2. British Association of Parenteral and Enteral Nutrition, “Report on UK enteral nutrition and oral nutrition supplement supply”, PENG and BANS report on behalf of BAPEN, August 2022.