Understanding Infant Reflux Survey

$3,625 of $3,600 goal

Raised by 80 people in 31 months


I'm Joanne Matthews, National President (in Australia) of the Reflux Infants Support Association Inc. We've been around since 1980 supporting parents of children with gastroesophageal reflux disease. 

We've been aware for a long time of serious inconsistencies in treatment for babies with this disease and how very hard it can be for parents. That there is very little sleep, very little understanding and a much higher rate of post-natal depression in the parents and perhaps a higher risk of harm to children. 

We put out a survey in June 2016 to get a better understanding. The response was overwhelming. Families everywhere wanting to share their stories. Hoping that their stories might make things better for other families if someone in authority could hear and see what they'd been through. 

With that in mind we want to have this data independently and professionally analysed and want to engage someone to do that work. We estimate that stage one will cost about $3600. A detailed breakdown of that cost is below. 

We would like to raise these funds as quickly as possible so the results are current at the time of publication. 

 We believe this data is a game-changer. We think that if the medical establishment are truly able to hear and understand this very large and heartbreaking story, they won't be able to fail but take steps to make a change. 

We believe as a result of this horrible and difficult disease, children and their parents lives are often put in danger. And that is not an exaggeration. Extreme sleep deprivation does horrible things to a person. Quite aside from becoming a danger behind the wheel. Parents are forced to sleep their children in dangerous positions against their better judgement, without medical imprimatur and often in secret. And rates of pharmaceutical prescription should be the least of our concerns. 

This is a high risk group that desperately needs attention and this data can provide it if we can only elicit its story accurately and in a way that will withstand scruitiny. 

We can only thank you in advance for understanding how important this work is and supporting it. All donations will be tax deductible. 

Explanation of data analysis. 
In Stage 1 we need to:
- organise the qualitative data (there's heaps of it) 8 hrs
- identify and draft a framework for reporting based on the quantitative and qualitative data - 8 hrs
- sort data into review framework - 4 hrs
- draft descriptive analysis including categorisation and themes, key comments that reflect key themes and match quantitative data to key themes identified in qualitative data - 8 hrs
- second order analysis - search for causes, build sequence of events and build "the story" told by the data, develop hypothesis and test - 8 hrs
- Organise findings for reference - 4 hrs
TOTAL 40 hrs

At $90/ hr we think this first stage will therefore cost around $3,600.
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Thanks so much to everyone who's been contributing and spreading the word. We're at two thirds of our goal for stage one of the research work! Officially 66%

If you've been thinking "oh I must make a donation to that", we'd be grateful if you could. We'd really like to get these preliminary results analysed and public as soon as possible.
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Thanks so much everyone. We're more than half way there!

Don't forget to share!!

Also, tune in to Kinderling Kids Radio tomorrow to hear me explain why this work is so important. www.kinderling.com.au at 12.20pm
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Thanks so much for your generous donations everyone! We've raised just under $1000 in less than 24 hours!

I know analyzing a surgery isn't the sexiest cause in the world but we need solid information to grab the attention of the people who can make a difference.

This situation can't go on. The experience of living with one of these children is more than most can imagine and we need to be able to quantify & communicate that.

Anything you can do to spread the word will make a difference. Thanks so very much for your support.
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Read a Previous Update
Rose Fox
30 months ago

If you want my help . My child was at the very severe end of GOR this had a huge impact on my family . I'm happy to be interviewed if needed .

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Sarah Auld
31 months ago

This is an important cause. Please give generously if you can!

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$3,625 of $3,600 goal

Raised by 80 people in 31 months
Created August 4, 2016
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$5
Anonymous
27 months ago
SR
$20
Samantha Ramm
30 months ago

Thank you RISA for being there for me, online, when I was all alone with a child with severe reflux. You all made me realise it wasn't in my head, and when days were hard, it was justifiable. Thanks.

MR
$20
Maria Rendon
30 months ago

Thanks to RISA I wasn't alone during the hardest time of my life. No doctor, no husband and no relative understands what a mother with a reflux infant lives. Only the mother can feel the pain of her child. And only her can endure the sleepless nights for months and even years. Thank you RISA for helping so many mothers and so many children!

KP
$20
Kylie Poole
30 months ago

It's so important that medical Professionals hear our stories

PH
$50
Paula Hawthorne
30 months ago

RISA is such a great organisation - I couldn't have survived the silent reflux of my son without you.

$20
Anonymous
30 months ago
AC
$50
Annette Casey
30 months ago

Thank goodness for RISA. Such amazing support and knowledge over the past 4 years. Wouldn't have coped without it.

Rose Fox
30 months ago

If you want my help . My child was at the very severe end of GOR this had a huge impact on my family . I'm happy to be interviewed if needed .

+ Read More
Sarah Auld
31 months ago

This is an important cause. Please give generously if you can!

+ Read More
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