Dr Chris Elliot is a general and developmental paediatrician who is passionate about feeding. Here, Chris shares how he’s working with families through the SUCCEED Child Feeding Alliance, championing a collaborative approach to getting tube-feeding right.

Wanting to work with families is why you started the SUCCEED Child Feeding Alliance – a collaboration made up of doctors, allied health professionals, researchers at three universities and, importantly, a growing network of parents. How did this all come about?

In 2017 I was encouraged to apply for a seed funding grant from an academic health science partnership called the ‘Early Life Determinants of Health’. After four years working in a feeding clinic, I had the opportunity with three others to pitch some ideas about making a difference to children’s feeding, especially for children who tube-feed, as they are the most seriously affected kids.

We pitched three ideas. Firstly, to properly understand parents’ experiences of tube-feeding so that we could make sure that the support we offer really aligns with what matters to families. Secondly, to create better data collection around feeding difficulties in children. And thirdly, to create online resources that families could access anytime, anywhere - not just when clinics are open.

We were extremely lucky to get a seed grant and the impact of that funding has been huge. It allowed us to have one person, one day each week for one year, who was dedicated to SUCCEED. That might not sound like a lot but it was. It allowed us to secure dedicated time for SUCCEED and to advance our work to a stage where people started recognising what we were doing, gravitating to the project, and bringing new expertise. We started meeting families and doing qualitative interviews with them.

We really fixed on this idea that we’ve got to ask families what is going on at home and when they are out and about, and the transcripts from our early focus groups with parents made me cry. It was shocking to me that I’d worked for four years in a feeding clinic and still had no idea what it was really like to tube-feed at home, or to do simple things like go out for a coffee or let their children play with others.

What was it about those transcripts that made you upset?

The families’ description of what it felt like to know that their child’s life was in the palm of their hand and to give everything over to that and to find it so difficult and challenging. To learn the way it feels to lose traditional mealtimes with your child at the table - things that are very important to me. I’m responsible for the cooking in my family and it’s something I care about.

Reading things like, “my mum didn’t want to come over”, “no one wanted to pick my daughter up any more, they were worried they’d pull the tube out”, “no one wanted photos with the tube in and I couldn’t go out, and people kept approaching me in the street”.

Then the courage and agency of these families to persist and succeed anyway – despite all that. You know, how could you not cry?

What do you mean when you say no one wanted photos with the tube in?

In several families, the grandparents had said: ‘Only send me photos when the tube comes out. I don’t want to show my friends that my grandchild has a tube.’

Photos, or lack thereof, have been a large part of SUCCEED, which is why it has been so important to have photographer Kate Disher-Quill work with us.

She has taken beautiful photos of children who are tube-fed just being children, rather than being ‘sick children’.

We realised that pictures of tube-fed children can sometimes be used as a visual shortcut for serious illness. There’s a risk that we’re showing the community that children who are tube-fed are seriously unwell, sick, delicate. That can be true, but it’s not the whole truth.

We had one family, who have a healthy young child with a nasogastric tube, who told us they were out in the shops one day and a stranger came over to them and asked, ‘I’m so sorry, when is your child going to die?’, assuming their child had terminal cancer. That’s just what this person had been conditioned to expect.

The question was quite logical, actually, and it’s not because people mean to be upsetting. They just haven’t had the chance to learn that tube-feeding, for some, can be life-enabling, not just life-saving. It can simply be one part of living a full and healthy life.

What did you do with all of these stories from parents once you had them?

In the stories that we heard, loneliness was the thing that really hit me. Until we started bringing them together, very few of the families who tube-fed their child had ever met another family in the same situation. But they’re everywhere, and the minute they do meet - regardless of different cultures, different languages, different health conditions, different hospitals, different paediatricians, different experiences – the families are just like, yeah, I understand what you understand.

So we had this idea that we wanted to form a support group – a parents’ group for tube-feeding families that we could refer people to. That’s still a vision for us. We’ve applied for grants to set up a pilot and have not yet been successful. But a couple of years ago, someone offered us $1000 of charity money and asked, ‘what would you do with this?’ From everything we’d heard from families, we thought, ‘what about a picnic for tube-feeding kids?’ and so we organised one.

We held a picnic at Sydney Olympic Park in 2019. Over 100 people came, including 14 clinicians who volunteered their time to come and help. We had entertainers drive down from Newcastle and up from Wollongong to offer their services for free. Channel 7 came and did a story on us. People just got it.

To this day – although we publish papers and we have a website – that’s probably the single most important thing we’ve ever done. We planned for it again in 2020 but, due to Covid, changed it into a video of joyful families who tube-feed; something to watch at home while you’re tube-feeding your own child. We’ll keep holding these gatherings – in whatever shape or form we can – so that families can do something fun with other families who are tube-feeding.

We’re aiming to build a community, one that respects the expertise of families and clinicians equally, and improves the health and wellbeing of children and their families both in the health system and at home. We want to build it on the foundations of innovative, brilliant research – not just good intentions. We aim to create a world where children with feeding difficulties thrive.

What’s your advice for parents who are new to the space?

Firstly, I’d say visit childfeeding.org. Go and look at the website and then write down all the questions that you have and don’t be afraid to ask as many questions as you need to feel comfortable. It feels hard and it is hard. It can be difficult

for healthcare professionals to tube-feed children, so of course it’s hard for families who haven’t done this before.

Secondly, know that you’re not alone. There are many other families who’ve done this. You will be able to do it. You can do this. And if you ever get stuck, then call your healthcare providers or come to hospital and ask to speak with someone who knows about tube-feeding.

Our qualitative research, based on people’s experience, shows that the first four days to four weeks are the hardest time. It does get better and the really hard, dark days at the beginning give way to competence and confidence and knowledge. Be ready to love and hate the feeding tube!

Also ask your clinicians about the long-term plan, early. Tube-feeding is really complex. It may be making your life really hard, but also be vital for your child, and then later children can get stuck on them even if weaning is an option. Have faith that it doesn’t define your child, the person they are becoming, the joy they can experience.

Families are not perfectly expert and clinicians aren’t perfectly expert, either. But when we come together we can create a life that is happy, fulfilled and safe for children who need tube-feeding.

Visit childfeeding.org for tube-feeding family resources, stories and support.

Fed is Best