Understanding Infant Reflux Survey
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.
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.
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.