Improving Care for Children with Feeding Difficulties and their Families
Feeding difficulties in children are common – some studies estimate that 1-in-2, to 1-in-3 parents and carers worry about their child’s feeding. For some families, child feeding goes far beyond worrying – their children need specialist therapy, medical support, or even feeding-tubes. When you have a child with a feeding disorder, life can be lonely and stressful. Although feeding difficulties among children are common, research about them is not. We know little about the experiences of children and their families – what they find helpful and how healthcare can be improved.
The Supporting Children with Complex Feeding Difficulties (SuCCEED) Project aims to improve the lives of children with complex feeding difficulties, and their families. Towards this aim, we use innovative and fun approaches to: highlight what works; understand what is not working; and learn from the expertise of children, their families, and the clinicians who support them. Specifically, we focus on:
1. Reducing the intensity or duration of complex feeding difficulties
Children who cannot eat or drink safely to ensure their healthy development, sometimes need enteral or tube feeding. Tube-feeding can be stressful for children and their families, particularly in the early weeks. We asked experienced parents, what do you know now, that you wish you’d known then? To share their expertise, a website was developed: www.childfeeding.org – this is the first research-informed, free Australian online resource by parents for families of children who need tube-feeds. We are also working with Nepalese families to modify the website for other Nepalese families.
2. The Power of Communities to Improve Healthcare
We are committed to improving healthcare with people. Children, their families, and the clinicians who support them are the experts we learn from. Furthermore, many – if not all – have the skills and knowledge to create positive change. Consider for instance:
- The first ever SuCCEED Tube Feeding Picnic – this idea came from parents and carers who told us that tube-feeding their child can be lonely and they wanted to meet others who share their experiences. We’re hosting this landmark event in Sydney, Australia, in March 2019 to bring together anyone with an interest in tube-feeding, particularly children and their families who have a lived experience.
- The first ever formal state-wide collaboration that we have established among all 9 Multidisciplinary Paediatric Feeding Clinics in New South Wales, Australia. In mid-2019, we will comprehensively collect data across the state to understand:
- How these clinics work
- How they support children with feeding difficulties and their families
- What the children and their families need and want
- The first ever use of a video-based approach to harness the expertise of parents, carers, and clinicians to understand what makes for brilliant feeding care
3. How the Lessons Learnt can Improve Healthcare for ALL Children with Complex Health Difficulties and their Families
Children with feeding difficulties often have other health conditions, like extreme prematurity, cerebral palsy, cancer, heart disease, and cleft palate. The lessons we learn through the SuCCEED Project will be adapted to improve the lives of children who experience these and/or other conditions, as well as their families.
Want to Learn More?
- Follow our progress via www.childfeeding.org and our news page
- Share your own story of tube-feeding
- Contact a team member:
Dr Chris Elliot, Paediatrician
Ms Kady Moraby, Speech Pathologist
