If you’ve never seen a child being fed with a tube, that might be because families find it so hard to get out and about and end up staying at home, alone. This is precisely what we want to address.
We’ve listened to families and now we need your help to give children who tube-feed their play time back. Visit our fundraising page below to learn more about our plan, who it is for, and why it will work:
Please share this page, share your story or even donate what you can happily afford. Anything you can do has a huge impact for children who tube-feed, and their families.
We want to help children who tube-feed and their families experience the joy of mealtimes, play, physical activities, and celebrations with others.
We want families, friends and relatives of these children to feel comfortable and confident including children who tube-feed in everyday life.
By facilitating the education of family relatives, friendship groups, play groups and the wider community using these resources, the lives of these children, their siblings and parents will be greatly improved.
Can you help us raise $10,000 to help children who tube feed play, laugh and participate in our community just like any other child?
With the generous support of University of Technology Sydney we are raising money to create the first Australian research-informed public awareness campaign for children who tube-feed.
Who will benefit?
Parents have expressed through research they are frustrated and saddened to see their child excluded, and this often translates into their own social isolation as they lose connection with others. Siblings are often also impacted by default, when their brother or sister is not able to join in social activities.
Children who tube-feed will directly benefit as they will be less excluded from play, shared mealtimes and celebrations with others – and in turn will benefit from all the developmental, social and emotional value these activities offer.
Impact of project
We aim to change the quality of life of young children who need to use a feeding tube. We want them to be able to experience the joy of mealtimes, play, physical activities and celebrations with others.
Tube feeding is more common than many people think and can be needed for many reasons including low birth weight, insufficient weight gain, childhood cancer, autistic spectrum disorder, genetic disorders, recovery from surgery and so on.
Much like children who consume food orally, children who tube-feed also enjoy playing with friends, sharing mealtimes and participating in physical activities. These are just as important for their development and emotional wellbeing. Unfortunately, too many children with feeding difficulties are excluded from these joys and miss out on the benefits they offer.
Outcomes of the project
Because tube feeding has so many different causes, it often falls through the cracks of existing health and charitable organisations.
We have undertaken research with families of children who tube-feed, and parents have consistently relayed the same message: that they have to constantly educate the people around them, that they find this difficult, but that it can make a huge difference to their children’s inclusion in play.
Wider research suggests exclusion is a result of stigma associated with a lack of understanding, and being afraid of what might happen to the child. Educating people on how to include children who tube-feed is likely to be impactful, as it is doubtful that they believe these children don’t deserve to be included.
How you can help
We imagine a world where a feeding tube isn’t a barrier to joining in meals, playing with friends, or celebrating with family and the wider community. We need your help to give playtime back to these children!
Visit our page today to learn more – and please, next time you sit down to eat a meal, please share our message!
The SuCCEED Tube Feeding Picnic is a time to come together as a community of people touched by tube feeding a child – family, friends, clinicians and researchers.
This year the picnic has been postponed due to COVID-19, but that’s no reason to feel alone. We are all in this together.
Watch and share this video with your family and friends. See our amazing families here playing, laughing, getting on with their days and bringing the joy back to mealtimes, no matter how they choose to feed.
You can be anonymous or acknowledged by name (or nickname) at the end of the video.
Please thank our amazing volunteers
We had some great entertainment volunteering at the picnic and not only have some spent money booking transport and accommodation, they have also given up the chance to earn an income at smaller events.
Please take a second to send some love and thanks to these amazing people:
Thank you to every one of the approximately 100 people who turned up to our first ever picnic. The sun was shining, music played and we came together as a community around the incredible children and families who are at the heart of the SuCCEED Study.
If you had professional photos with Kat Cvet please give her a few weeks to send out the link to them. We will update childfeeding.org with video and photos from the picnic once we have edited them all.
The message from the picnic was “you are not alone”. We look forward to walking the next steps, together.
the SuCCEED Study team
These were our picnic details. See you next year!
The FIRST EVER SuCCEED Tube Feeding Picnic 2019 was held at Hill Pavilion, Sydney Olympic Park on Sunday 31st March 2019 from 10am – 2pm.
There was child and tube-friendly entertainment generously donated by some wonderful performers:
The Supporting Children with Complex Feeding Difficulties (SuCCEED) study group have been hard at work over the Summer.
We’re delighted to report that preliminary data collection for two of our four study goals is now complete:
1. Tube Education
Nine amazing families have been interviewed for our tube education element. Under the supervision of A/Prof Nick Hopwood from the University of Technology Sydney, we’re having the interviews transcribed and then we will start working to make an education package right here on childfeeding.org that matches what these families asked for.
Once we’ve made the package, we’ll be inviting families to review and comment on it to make sure it’s exactly right.
2. Brilliant Care in Feeding Clinics
The incredible staff and patients of Liverpool Hospital, Sydney, have finished the main data collection during clinic time. Under the supervision of Senior Lecturer Ann Dadich from Western Sydney University they are now finalising the reflexive feedback, which will help us start to understand what makes brilliant care in tertiary feeding clinics.
The remaining two elements of SuCCEED – identifying models of care and piloting measures of distress in parents and carers – are well underway and on track to be in their final stages by July 2018.
We have the first meeting of our Parent Advisory Group coming up in April, which the study group are very excited about.
Finally, we are in the very early planning stages for Year 2 of SuCCEED. We will be applying for funds to launch a huge new initiative, based on early research findings from our focus groups. Stay tuned for more SuCCEED news here!
– Dr Chris Elliot, Paediatrician and Chief Investigator SuCCEED Study