Delivering on what research says is needed… an activist action research initiative

Beyond description: an activist approach to research

This blog post is about an action research study. It aimed initially to produce a new website for families of children who cannot feed orally, so use tube. We deliver our promise – – but as is typical in action research, the more we listened to families, the more we realised needed to be done. So, we have launched a fundraising campaign to raise the $10,000 we need to take the next step and make a bigger, positive difference to families of children who tube feed. If you want to skip straight to the end, here’s the link to the fundraising page. Please consider sharing the link with people you think might be interested to donate!

Introducing the SUCCEED study

The SUCCEED Study is funded by Maridulu Budyari Gumal / Sydney Partnership for Health, Enterprise, Research and Education. Our purpose is to use collaborative research, where families, clinicians and researchers collaborate, with equal input and ownership of the project.

Summary of SUCCEED Study video produced with our funders Maridulu Budyari Gumal

The first thing we did was listen to families. We heard stories of what it is like parenting a child who is tube fed. We heard how important it is to maintain social activities – playdates, picnics, birthday celebrations, and physical activities (kids who tube-feed can run, jump, and swim!). We also heard how difficult this can be, not just because of the logistics of tube feeding, but because of the way members of the public often react to tube feeding.

What’s wrong with her? Oh gosh, how awful, how long does he have?

That’s the kind of thing parents told us other people have said to them. They also told us how they can end up isolated from friends, because their friends worry their own kids might hurt the ‘fragile’ (so they think) child who tube-feeds.

It wasn’t all doom and gloom! Parents told us a lot about the MacGyver-type strategies they use to get out of the house, help their children join in social activities with others, and respond confidently and positively when the public are curious (or worse) about the tube.

So, the next thing we did was build a website: This is full of content that came directly from parents, sharing their tips and tricks for everyday life, how they navigated important decisions, and also presenting their Real Stories – showing how every tube-feeding journey is different.

We also did things like organise Australia’s first tube-feeding picnic, which was featured on Channel 7 News. This was a chance for families to get together and celebrate. Many people offered support to make this happen, including a bubblemakers and group of superheroes who came all the way from Newcastle to bring some extra special joy to children at the picnic!

SUCCEED’ Irene and Connor, and our Tube Feeding Picnic on Channel 7 News

But our job is far from done. Parents tell us time and time again that it would make a really big difference if tube feeding was everyone’s business. Many people have never met or even seen a child who feeds using a tube. Tube feeding is often unfamiliar, scary and confronting.

Parents have asked us to work with them put together a public awareness campaign. This will be based on positive values, helping to normalise tube feeding, and showing that kids who tube feed can be happy, healthy and thriving as can their families.

Instead of tube feeding being something horrible that happens to other people, we want tube feeding to be something that everyone understands and can respond appropriately to: not with shock, fear or pity, but with a sense of connection, positivity and that they can do something be part of happy, thriving lives for kids and families.

That’s what we need $10,000 for. We’ve set up a (totally legitimate!) fundraising drive through UTS Causes. People have been incredibly generous so far, but we have a long way to go. And if we exceed our target, we will simply do more of what parents tell us we should be doing!

So please: consider donating – every cent counts! If you can’t or prefer not to donate, you can still help by sharing this link – on facebook, twitter, with people you know:

Everything I do on this blog is done in my own time. Everything on it is freely available to anyone with an internet connection. If you’ve ever read something on this blog and found it useful, this is a cool opportunity to give back – not to me, but to a cause that I care dearly about 🙂

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