Bringing the joy back to mealtimes for kids who are tube fed with the SUCCEED model of home-based health care
Dr Chris Elliot, specialist in General Paediatrics and Community Child Health
Parents shouldn’t have to visit a hospital just so their child can eat. Sadly, this is the situation currently affecting thousands of Australian families who tube-feed their children. Newborn children with serious health conditions are often unable to safely eat or drink. In order to stay alive, these children are fed by a tube passed into the stomach or intestines. SUCCEED aims to reduce the number of kids requiring tube-feeding and reduce the amount of time being tube-fed.
SUCCEED was developed by Dr Chris Elliot together with his dedicated team of medical specialists, academics and parents who are conducting world-first research into the way that tube-feeding care is currently being delivered. This research will create an evolution from simply delivering healthcare to empowering families and clinicians to co-create brilliant healthcare outside the hospitals – in homes, parks, schools and cafes where families feed their children every day.
From picnics to podcasts to a plan to make cafes ‘tube-fed friendly’, their goal is to offer a new model for world class, research-informed health care in the home by creating an evergreen suite of online resources available on demand anywhere at any time.
The Challenge
Families who tube-feed their children report feeling lonely, stressed and unsupported. There is also very little research into tube-feeding globally and the research that is available is generally clustered into disease silos where cancer specialists research tube-feeding in children with cancer or cardiologists research tube-feeding in children with heart disease. However, families who tube-feed their children have more in common with each other than they do with other families within their ‘disease silo’ who may not have any feeding issues.
SUCCEED identified a need to create resources for families by families, with clinical and research support as there has been no research-informed group in Australia that crosses these barriers and brings all tube-fed families together.
How this project will help?
Over the past five years, SUCCEED has launched Australia’s first ever research-informed online resource for families of tube-fed children. The team also formed a productive collaboration with three universities, 11 feeding clinics and dozens of families, and began several innovative pilot studies.
Utilising this current momentum, and with support from the TFN event, the team have now created new communities of experience and expertise and research-informed online resources available in different languages.
The aim is for parents to gain confidence and become part of a community of shared experience and by reducing the number of hospitalisations needed for tube-fed children, we will be helping to save money in healthcare costs.
The SUCCEED Project will also make a significant contribution towards research in other complex and chronic health conditions.
Impact over the first year
- The SUCCEED team have produced further resources on www.childfeeding.org of national significance to the tube-fed community.
- Dr. Chris Elliot and the SUCCEED team have created a tube-training program for parents and carers. Facilitated by parents and clinicians, the workshops will help to reduce the enormous stress placed on primary caregivers by training other family members to safely tube feed.
- Dr. Chris Elliot and the SUCCEED team received a donation of two training mannequins for the workshops and the SUCCEED team are already well advanced in designing, evaluating, writing and developing multimedia content for the course.
- One of the significant developments is that SUCCEED have now been able to partner with Vudoo.com, a cutting-edge interactive video platform that will host the video content. This means that families will be able to customise the information they access before and after the workshop and significantly improve how timely and useful the SUCCEED content is for them. The SUCCEED team have submitted an application to present the workshop, including the interactive video component, at a major international conference later this year.
- Working with families, Chris and his team have developed a new model that allows local cafes to indicate they are ‘Tube Feeding Friendly’. Their aim is to reduce the social stigma of tube feeding children in public and help tube feeding families to find each other in the community. Read more.
- The team hosted their Annual Tube Feeding Picnic at Sydney Olympic Park, the first of several planned for this year.
- A/Prof Ann Dadich, from the SUCCEED team is leading a project that involves translating the wisdom of friends and relatives of children who tube feed to the families and friends of those who are new to it. Along with Prof Nick Hopwood, Chris Elliot and Anna Lerardo, Ann is working with a talented artist to create visual resources to be shared online.
- The SUCCEED team have produced a number of publications, presentations and podcasts.
What next?
A/Prof Ann Dadich and Dr Chris Elliot continue to work with the St George Multidisciplinary Paediatric Feeding Clinic on better understanding what current care is, what brilliant care looks like and how we can bridge the gap between those two. Following the successful completion of the first study over the past 3 years, they are in the process of applying for a second HREC approval to implement some of the ideas that have been generated.
Following an amazing Tube Feeding Picnic 2019, Chris and his team planned and booked THREE further picnics in 2020-22, all of which had to be cancelled due to the pandemic. They will continue to plan for more in 2023, to get back out into the sun and safely share a blanket and some fun on the grass.
“We entered 2022 hoping to expand our funding base to include philanthropic donations so that we could continue to push the boundaries of innovative collaboration in line with our "by families, for families" philosophy. Thanks to the incredible generosity of donors and with support from the Sydney Children's Hospitals Foundation we have achieved an amazing result took most of the year (and part of 2021) but it is the first significant funding we have received in nearly 2 years and really allows us to start implementing some of the ideas families have shared with us. All of this money will go directly into our programs for 2023” - Dr Chris Elliot
Parent story
Lisa is taking her child Ellie out to a café. It is mid-morning but she is already tired. She can’t remember the last time she didn’t feel tired. She is just closing her front door when she remembers she has forgotten to pack some spare sticking tape for Ellie’s feeding tube. She rushes back into the house and opens the cupboard, noticing that her supplies of tape, syringes and formula are running low. She will need to go online later and order some more. That’s going to be expensive, so she decides not to have food at the café.
On the way to the café, the Velcro holding up Ellie’s feeding tube comes off from the internal roof of the car. Lisa sees this through the rear view mirror, and sighs. That means Ellie is missing a feed and she’ll need to do it in the café. Not ideal. Last time she fed out in public there were a lot of unwelcome stares, and she overheard a mother answering her child’s question about what the tube was for “Well, Billie, that girl is very sick and she can’t eat the way you and I do. Sometimes it’s very sad and young children are so sick that they don’t grow up to be old. It must be very hard for her mummy".
So, with a heavy heart full of burden, doubt and low expectations, Lisa parks and walks to the café, struggling to carry all the tube-feeding equipment and keep hold of Ellie’s hand on the busy road. They find a table and sit down. Anxious about the missed feed, Lisa sets up the feeding tube and sits, holding the top above Ellie’s head so the food can flow down.
A member of staff from the café comes over.
“Oh, I see you’re tube-feeding. Hello! What’s your name?”
“Ellie” says Ellie.
“What a gorgeous smile you have! It’s lovely to meet you Ellie”.
The waitress turns to Lisa.
“I’m happy to take your order here at the table if you like, and you can come and pay later when you’re done with the feeding. We normally offer a free babycino but we also have some stickers, I’ll bring those over for Ellie”.
Almost stunned into silence by what has just happened, Lisa orders her coffee. As she heads back to the kitchen, the waitress turns round and says:
“Oh, by the way, we have had a few kids who tube-feed come here quite regularly. We know they tend to vomit a bit more regularly. Don’t worry if that happens, just wave at us and we will come and sort it”.
For the first time since Ellie was born, Lisa is out in public and fighting back tears, not of sadness, but of joy in realising just how powerful small acts can be.
"On behalf of the entire SUCCEED team, as well as all the children and families who will benefit from your generosity, I want to say an enormous thank you: for believing in our work, for trusting us with your donation and for trying to change the world for children who tube feed. At the heart of SUCCEED we are trying to find small changes that will have a big effect for children and families, and we will take great care to make sure your donations help as many people as possible." - Dr Chris Elliot
