Home Enteral Nutrition Quality of Life
This study was conducted by Dr Mercedez Hinchcliff, a researcher at the University of Wollongong and President of ausEE Inc. The purpose of this research was to investigate tube feeding and elemental formula use in Australia/New Zealand and health-related quality of life. The study survey was open from February 2023 to October 2023.
View the Summary of Survey Results for Home Enteral Nutrition (HEN) which were released during Feeding Tube Awareness Week 2024 here.
Read the abstract ‘Evaluating Quality of Life in patients who use Home Enteral Nutrition in Australia/New Zealand’ in the Journal of Gastroenterology and Hepatology AGW24 Supplement, Nutrition section here.
This study was reviewed by the Human Research Ethics Committee (Social Science, Humanities and Behavioural Science) of the University of Wollongong.
This study was reviewed by the Human Research Ethics Committee (Social Science, Humanities and Behavioural Science) of the University of Wollongong.
Home Tube Feeding Research
The University of Sydney is conducting research looking at the experiences of adults receiving home tube feeding in Australia.
The study involves:• A 2-5min survey to check if you are eligible• A 10-15min survey asking about your demographics and condition• A 30-60min audio-recorded interview
Learn more and check your eligibility here.
The study involves:• A 2-5min survey to check if you are eligible• A 10-15min survey asking about your demographics and condition• A 30-60min audio-recorded interview
Learn more and check your eligibility here.
This study has been approved by the Ethics Review Committee (RPAH Zone) of the Sydney Local Health District. Any person with concerns or complaints about the conduct of this study should contact the Executive Officer on 02 9515 6766 or SLHD-RPAEthics@health.nsw.gov.au and quote protocol number X23-0161.Version 1.0, 09/12/2024
SUCCEED Research
SUCCEED is an Australian not-for-profit bringing together families, clinicians and researchers who want to change the world for children with feeding difficulties. Their Mission is to help families celebrate and embrace mealtimes, however they choose to feed.
SUCCEED has a focus on researching and sharing gold-standard feeding tube practices, to create a world where children with feeding difficulties, especially those who tube feed, thrive.
In 2025-2026 SUCCEED is working to create resources and support especially for the early days of tube feeding, to help that initial transition from hospital to home be as smooth and positive as possible.
Visit the ChildFeeding.org website to find out more about SUCCEED.
Publications:
- “The Kitchen is My Favrote Place in the House”: A World Worth Living in for Children with Feeding Difficulties and Their Families
- New consensus definition on defining and measuring care for children with paediatric feeding disorder
- Clinician and carer moral concerns when caring for children who tube-feed
- 'it was that … specialist … that finally listened to us … that's probably a weird answer to what you were expecting’: Clinician and carer perspectives on brilliant feeding care
- Process improvement of a paediatric feeding clinic
- How is Brilliance Enacted in Professional Practices? Insights from the Theory of Practice Architectures
- Parenting children who are enterally fed: How families go from surviving to thriving
- Paediatric tube-feeding: An agenda for care improvement and research
- Forward anchoring in transformative agency: How parents of children with complex feeding difficulties transcend the status quo