ChildFeeding.org

We have a massive “thank you” for Sydney Children’s Hospital Foundation and the incredibly generous donors who joined us for the first online fundraising event.

Together, we raised an amazing $30,000 for SUCCEED!

We suggested three projects for funding, and we will be working with our team the Sydney Children’s Hospitals Foundation to make a plan for these essential funds.

We won’t waste a single dollar, and we can promise that these donations will change the lives for children who tube feed, and their families.

You can watch a recording of the live giving event by clicking on this link. Dr Chris Elliot, on behalf of SUCCEED, starts at about the 10 minute mark.

At childfeeding.org we are often asked about blended tube feeding options for children. While blended tube feeds work very well for some children and families, they are not suitable for everyone. Whether or not to try blended tube feeds is an individual decision that should be made with your usual healthcare providers.

In 2021 an Australian guideline for blended tube feeds use was created by AusPEN (Australasian Society of Parnteral and Enteral Nutrition).

It is short, practical and may be worth taking to your next consultation if you are interested.

Here’s a new page we’ve made to help you find your way

Blended Tube Feeds

SUCCEED were incredibly lucky to have the opportunity to collaborate with UTS student group the NEU Collective. NEU Collective developed a brand toolkit for SUCCEED, including these three remarkable videos. Please watch and share!

We did it!

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.

Channel 7 News even did a story on the SuCCEED Study, including footage from the picnic and starring the incredible Bernard family. Click here to watch the extended online version and please share it widely!

A huge and special thank you to all our volunteer clinicians, entertainers, and photographers for making this such a special day. We could not have done this without you.

This picnic was another important step towards improving the lives of children with complex feeding difficulties. If you would like to give us feedback on the day, share your story, help us with our research or apply to join the research team please click here to contact us.

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:

• Hand and face painting by JellyBeeNa the Clown and Hunter Heroes.
• Bubble entertainment by Bubbly.
• Ballon twister entertainers dressed as fairy’s and princess and Ryder from Paw Patrol with a mascot will make an appearance by Fly by Fun.
• Super hero entertainers by Hunter Heroes

Come join us in 2020 – details here!

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.

Other News

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

The SuCCEED Study is grounded in the idea that we want to take better care of children with feeding difficulties, and their families.

We’re not just full of good intentions though.  As with all research projects in Australia and internationally, the SuCCEED team is required to submit a detailed research plan for rigorous external, independent evaluation by an accredited Human Research Ethics Committee.

Our research proposal was reviewed by the Sydney Children’s Hospitals Network Human Research Ethics Committee, and assigned the unique identifing number LNR/17/SCHN/340.  We’re delighted to announce today that the study proposal has been given full approval to commence.  This is a significant milestone for the SuCCEED Study, and paves the way for our research to begin.

Please keep visiting ChildFeeding.org for further updates.

Dr Chris Elliot

Chief Investigator, SuCCEED Study

 

Feeding difficulties in children are really common – some studies estimate that 1 in 2 to 1 in 3 parents worry about their child’s feeding at some stage.  For some families their child’s feeding goes far beyond worrying – their children need specialist therapy, medical support or even feeding tubes to stay safe.

Research into feeding difficulties in children is not common.  Despite lots of hard work in Australia and around the world to try and help children with feeding difficulties  we still don’t know as much as we would like about looking after these children.  More importantly, we don’t know much at all about what parents, carers and children themselves want from their healthcare services.

The Supporting Children with Complex Feeding Difficulties (SuCCEED) Study in Sydney, Australia, is attempting to answer the question “what makes great care for children with feeding difficulties and their families?”  This is a really big question, so we’ve broken it down into four parts:

1.  What are we currently doing in our Feeding Clinics and how should we measure the quality of care that we provide?
2.  How common is stress and distress in parents and carers of children with feeding difficulties?
3.  What do parents / carers and clinicians think brilliant care looks like?
4.  What do parents and carers want to know about feeding difficulties?  We’re starting with those with the highest support needs; family of children who need feeding tubes.

In 2017/18 we are starting small, to make sure we are using the right methods and collecting the right data to answer these questions the right way.  If we’re successful, we hope to expand the kinds of questions we ask, and where we ask them.

We invite you to follow along our progress through ChildFeeding.org.  Thank you for your interest and support!

– Dr Chris Elliot, Paediatrician and Chief Investigator for the SuCCEED Study.