After being approached by Dr Chris Elliot, paediatrician at St Georges Hospital, to help create an educational package for parents whose children have complex feeding difficulties, UTS’s Associate Professor Nick Hopwood says he was quick to sign up.
“Dr Elliot initiated SUCCEED – Supporting Children with Complex Feeding Difficulties – because he saw the need to do more to help families adjust to their new situation when going home from hospital with a tube-fed child,” explains Hopwood.
“Although the medical profession was successfully addressing the child’s need for nutrition – via a naso-gastric tube (through the nose) or one placed surgically close to the stomach – the biomedical side of things is actually a small part of the picture. Everything else has a steep learning curve and, prior to SUCCEED, too many parents were left on their own to figure it out.”
As an educational researcher interested in learning in diverse contexts, Hopwood soon got to grips with the issue and, together with the SUCCEED team, embarked on a research project to determine the best way to assist these parents.
“The first thing we did was listen to families. We heard stories of what it’s like parenting a child who tube-feeds and how important but challenging it can be to maintain social activities, not just because of the logistics, but because of the way people can react,” explains Hopwood.
“Many people have never met or even seen a child who feeds using a tube so it can be confronting for them. Comments like, ‘Oh how awful’ or ‘How long does s/he have?’ are common and can lead to parents feeling stigmatised, isolated and withdrawing from contact with others.”
We're really only just getting started and can see many positive, long-term outcomes coming to fruition as part of the project.
— Dr Chris Elliot, Paediatrician, St Georges Hospital
Their intelligence gathering exercises were very valuable and parents shared all the MacGyver-like strategies they use to get out of the house, help their children in social activities, and respond confidently and positively when their family, friends or the public are curious (or worse) about the tube.
The SUCCEED team used the information to build a one-stop-shop website called childfeeding.org which contains multiple tips and tricks for everyday life.
“We created video content of parents and carers generously sharing their stories, showing how every tube-feeding journey is different,” Hopwood continues.
Feedback from users and physicians, who can now direct families straight to this resource, has been excellent and Hopwood recently received a UTS Social Impact Grant to undertake more research and ‘go beyond advocacy to action’ by laying the foundations for a strategic public awareness campaign.
“Our next steps are to continue building the website, apply for more grants and attract philanthropic funding to activate our public awareness campaign. We have already organised Australia’s first tube-feeding picnic, which was featured on Channel 7 News.”
Hopwood says community education is a strong feature of what they are trying to achieve. “We want tube-feeding to be everyone’s business, to create a narrative that children who tube-feed are normal active kids and not to be pitied, and to create an atmosphere where families can proudly take their kids anywhere in public, not hide them away at home.”
Dr Eliot says he is thrilled with what SUCCEED has achieved so far and is looking forward to working with Hopwood and the team into the future.
“We're really only just getting started and can see many positive, long-term outcomes coming to fruition as part of the project,” he says.
Interested in helping spread the word?
Nick Hopwood and the project team have set up a $10,000 fundraising drive through UTS Causes.
Research team
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Associate Professor, Professional Learning -
Chris ElliotPaediatrician, St Georges Hospital
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Khadeejah MorabySpeech Pathologist, Sydney Children's Hospitals Network
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Ann DadichAssociate Professor, Western Sydney University
Faculty
- School of International Studies and Education
- Faculty of Arts and Social Sciences
Funded by
- UTS Social Impact Grant
- Early Life Determinants of Health Clinical Academic Group, part of Maridulu Budyari Gumal / Sydney Partnership for Health, Enterprise, Research and Education
