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 will be at Hill Pavilion, Sydney Olympic Park on Sunday 31st March 2019 from 10am – 2pm.
Everyone is invited! If you have been affected by tube feeding a child in any way – as family, friends, carer or clinician – please join us for a mealtime with people who know how hard mealtimes can be.
There will be child and tube-friendly entertainment generously donated by some wonderful performers:
There will information on tube feeding, funding support options and the chance to meet and share your experiences with other families who know what it is like to tube feed their child. We will also be gauging interest in starting a regular Tube Feeding Support Group and Newsletter so if you are interested please bring your ideas!
Where: Hill Pavilion, Sydney Olympic Park (map below)
When: Sunday 31st March 2019
When: 10am -2pm
What to bring: Bring a picnic rug, all your own food and a smile. That’s it!
Free Professional Photographs Kat
Cvet is a professional photographer whose nephew required tube feeding.
She knows how to take beautiful photos even with an NG tube.
Kat has generously donated a LIMITED number of FREE professional photography sessions on the day. Each family will have about 5-10 minutes with Kat. Please register your interest below so you don’t miss out!
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
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.
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:
What are we currently doing in our Feeding Clinics and how should we measure the quality of care that we provide?
How common is stress and distress in parents and carers of children with feeding difficulties?
What do parents / carers and clinicians think brilliant care looks like?
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.