Improving Care for Children with Feeding Difficulties and their Families
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. Evidence and experience tells us that when you have a child with a feeding disorder life can be very lonely and stressful.
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 is based in Sydney, Australia, and aims to improve the lives of children with complex feeding difficulties, and their families. We’re tackling this issue in innovative ways, always looking to highlight and share the knowledge and brilliance already in our clinics and communities rather than simply categorising problems and deficits.
Our approach focuses on a few key themes. We are particularly interested in:
1. Anything that can reduce the intensity or duration of complex feeding problems.
We’re starting with the most severe issue – children who cannot safely eat or drink enough to stay alive and who require enteral (tube) feeding.
We know that the first 4 days to 4 weeks is a particularly stressful time for families new to tube feeding, so we asked a group of experienced parents “what do you know now, that you wish you’d known then?”. The result of those conversations is this website: http://www.childfeeding.org. The first research-informed, free Australian online resource by parents, for families of children requiring tube feeds. It is available anywhere, anytime.
We are also working with Nepaliese families to produce a version of the website entirely in the Nepali language, informed by their unique experiences and needs.
2. Creating and examining the power of communities to change healthcare.
Rather than simply doing better care at patients, we’re interested in creating better health with people. We are looking at the ways families and clinicians, both new and experienced, can create communities to share their knowledge to enable powerful, positive change.
Families told us that tube feeding their child can be very lonely, so we’re hosting the first ever SuCCEED Tube Feeding Picnic in Sydney in March 2019 to bring together anyone touched by tube feeding in a fun and open way.
We’ve created the first ever formal statewide collaboration between all nine Multidisciplinary Paediatric Feeding Clinics in NSW, Australia. In mid-2019 we will be undertaking the first statewide data collection to try to understand what is happening in the clinics, and what families attending these clinics want and need.
We’ve employed novel qualitative research methodology to ask clinicians and families about the brilliant things happening in their clinic appointments – practices that we can and already have shared widely to improve care quickly.
3. Respectfully sharing the lessons we learn from SuCCEED beyond child feeding, to other complex health issues.
Children with complex feeding difficulties often have significant underlying health conditions, such as extreme prematurity, cerebral palsy, cancer, heart disease, cleft palate.
The lessons we learn about the positive, community-based and family-informed interventions that we develop through SuCCEED may be able to improve the lives of children with those conditions who do not have feeding difficulties.
We invite you to follow along our progress through this site, ChildFeeding.org and our news page. You can contact me about the study at any time, or share your own story of tube feeding if you want to. Thank you for your interest and support!
– Dr Chris Elliot, Paediatrician and Chief Investigator for the SuCCEED Study.
March 2018 on behalf of the SuCCEED Study Steering Committee:
A/Prof Nick Hopwood
A/Prof Ann Dadich