30 May 2019

First of its kind research for tube fed kids

Mealtimes are so much more than a chance to refuel. They’re a chance to connect with loved ones. To share stories with family. To celebrate and relate.

At least, this is how mealtimes should be.

The reality, though, is very different for families whose children are tube fed. Mealtimes are fraught with difficulties for these families, leaving what should be an enjoyable occasion, a distressing one.    

Supporting Children with Complex Feeding Difficulties (SuCCEED) is a group that’s been set up to support families of children with a broad range of feeding difficulties. The group is an initiative supported by the Early Life Determinants of Health Clinical Academic Group at Maridulu Budyari Gumal.

While SuCCEED’s purpose is to address the full spectrum of feeding issues, they are currently focused on the most challenging of these: tube feeding.

Research conducted by SuCCEED’s tube feeding pilot project found that there is no formal support for these families, little research on the subject, and care varies widely. Some services have standardised interventions, others provide ad hoc support.

It’s for this very reason that SuCCEED’s Dr Chris Elliot says, “we want to change the world for these families. It’s our mission to improve the lives of children with complex feeding difficulties.”

Living with a child who is tube fed

When a young child is fed through a tube, due to a medical condition or other complication, every day is a delicate balance.

Parents are expected to act as healthcare professionals and understand what to do in all circumstances. Insert and clean the tube. Check medications. Check tube positioning, aspiration and taping. Look out for blockages or twists in the tube. “And these families feel like they can’t afford to get it wrong because it’s their child,” emphasises Chris.

For some families, the situation can mean countless trips to the hospital.

The knock-on effect of this leaves families incredibly isolated. Their experiences are so unique that mealtimes with friends and others outside the home are a thing of the past. Tube feeding is a condition that can make others want to look away or not be around at mealtimes.

It’s this loneliness that the SuCCEED team is most motivated to combat. As Chris so eloquently puts it, “People don’t feed kids with their brain. They feed their kids with their heart. Always.”

What SuCCEED hopes to achieve

The challenge with any child that has a feeding difficulty is that there are a whole host of complexities surrounding any given issue.

Some children might be feeding through a tube because they have a cleft palate, or their feeding has been impacted due to cerebal palsy, autism or a heart or cancer-related condition. Others may have psychosocial issues.

There is no one-size-fits-all solution to helping children who feed through a tube.

However, there is a lot SuCCEED is doing to help these kids, and their families, lead more normal lives.

This includes:

Reducing variation in clinical care
Reducing the severity and duration of feeding difficulties
Helping children with feeding difficulties thrive.

“The point of the project is to reduce the depth and duration of the deviation,” Associate Professor Nick Hopwood at SuCCEED tells us. “It’s about looking at how much support a child needs and how long that support goes on. That’s important.”

A new kind of research

The most groundbreaking aspect of SuCCEED’s tube feeding project is its research.

First of its kind
The research brings doctors, researchers and families together to co-design the work. This has never been done before. The team is also using exciting new methodologies not used in this space before.
Videoing families as a framework
Rather than ask families to complete a survey or questionnaire, the SuCCEED team video each family’s appointment with their clinician.

“The novel work we did at Liverpool was to record all the sessions and then play them back to the clinicians and parents,” says Nick.

During the sessions, they capture very personal, real and raw information to understand the struggles these families face every day. What happens. What they wish they’d known. What would’ve been useful to know. What they’d tell other families going through similar difficulties.

The power of SuCCEED’s approach

At the heart of SuCCEED’s research is listening. Not just to the ideas of clinicians, but to the needs of parents and the challenges their kids face.

Gives parents a voice
“The first thing we do is listen,” says Nick. The research methodology involves watching clinicians and families in real interactions, and then bringing them in later to discuss and reflect on the experience. To understand their needs, in their words, about what it means to have a child that tube feeds.

The idea is to allow families the space to talk, to unload, to ask questions. “And we listen the whole way through. It’s just so exciting that the voice of parents is so loud in this project” adds Nick.

It’s observational, candid research that truly seeks to understand tube feeding from the patient/carer perspective – as opposed to a set of variables.
Healthcare with families, not for them
For the most part, the traditional model of healthcare is that clinicians do healthcare for people. It’s healthcare that’s aligned to a mission and compliant with guidelines.

This approach changes when clinicians sit with families, day in and day out. Instead of doing healthcare for people, they are doing it with them. It’s something that has become particularly apparent within the tube feeding project.

Through their work, SuCCEED is learning from the experiences of all kinds of families, and using their experience to teach other parents. It’s firsthand knowledge, shared by parents for other parents.

“It’s healthcare with families,” says Chris, “and this is how you change lives.”
Focused on brilliance
To ensure the families and children with tube feeding difficulties get the best support they can, the SuCCEED team is focused on quality improvement and assurance.

The typical way to measure quality is to look at a clinician’s KPIs and identify those targets a clinician is not meeting. The SuCCEED team decided to do something a little different.

After each appointment with a family was filmed, the team asked the clinicians to watch the playbacks and pick out the things they did well. Then they took the videos to another group of clinicians and asked them to pick out their peers’ moments of brilliance.

“The amazing thing about focusing on brilliance is that it doesn’t cost anything. It’s highly transferrable, as people don’t often realise the brilliant things they’re already doing. It’s incredibly motivating to focus on brilliance,” Chris enthuses.
It connects families
Loneliness is the very real, unfortunate result of having a child that is tube fed. Just involving families in their work and ensuring they have a voice, has enabled the SuCCEED team to rebuild connections for these families.

“Yes, we offer information and some services, but at the heart of it all is different kinds of connection between the families we see.”

It’s the connection that really adds value to SuCCEED’s work. They take the time to understand a family’s struggles and share those struggles with other families going through the same thing. Just being able to recognise and relate to other families out there makes all the difference.

As Nick says, “connection is a small thing that has a really big effect.”

The strength of collaboration

When SuCCEED first came into existence, the team discovered a growing frustration amongst healthcare professionals within the tube feeding space. Frustration that support is ad hoc, standards are variable and there are no formal guidelines on the subject.

At the same time, they noticed a desire to come together, across clinics and states, to address the issues with tube feeding. Through opportunities within the Maridulu Budyari Gumal partnership, SuCCEED has connected with other clinicians, hospitals and organisations with a special interest in tube feeding.

Together, they are learning from each other and discovering who’s doing tube feeding training well, and who could do with some support. Sometimes, it’s an opportunity to collaborate on projects together.

As Chris says, “I think we often get caught up, especially in my profession, working in silos. The reality is, if you expand your work you realise that other people are noticing the same things. They have the same goals and want to see the same change. Sometimes it’s just the reassurance of knowing that we’re on the right track.”

Nick, adding to Chris’s revelation about collaborating within a niche, couldn’t agree more. “It’s a really exciting space to be in!”


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