Go here to do yours:
It will only take 15, maybe 20 minutes at most (depending on your answers), is completely confidential, and totally easy to use. The design is even Section 508 compliant (the US standard for disability accessibility) so those with visual and other physical impairments will find it manageable too.
Who can do the survey?
Anyone who's ever used BD as a part of their diet or the diet of a caree.
Why are we doing this?
Anecdotal evidence suggests that there are many barriers to tube-fed adults and the parents or carers of tube-fed people (children and adults alike) regards the possibilities of a natural diet, and that broadly speaking this is a seemingly global phenomenon. These barriers include but are not limited to:
- Lack of knowledge that natural food is an option for tubefeeding.
- Multiple forms of resistance from many in the medical community, including the apparent perpetuation of what many people successfully using a blenderized diet consider mere myths.
- Lack of knowledge in how to go about creating a natural diet suitable for tubefeeding.
- Cost, time, and other lifestyle-related factors.
- Widespread (though not uniform) lack of support from medical professionals, medical insurance providers and other traditional social support structures (eg family, community), possibly again through lack of awareness.
- Lack of support for tubefeeding in general.
- Lack of any quantitative study of the experiences of people using a blenderized diet as a basis for making informed decisions.
This study sets out to address many of these issues, and may also find further evidence to support or refute commonly-held beliefs about many positive or negative attributes of a blenderized diet versus commercial enteral formulae.
The survey aims to get some quantitative rigour around many of these questions and issues. Once completed, the results will be compiled, studied, notated and released for use by everyone who may benefit from them. There are several medical students and professionals who ave expressed an interest in turning the data into a formal case study for publication - or perhaps I'll do exactly that myself. Despite the cost of licensing the survey tool being covered by a sponsor, there is no commercial interest in any way in this survey, and the data will be made FREELY available (minus any identifying material or comments). There is the option for you to submit your email address with your survey and have the results emailed directly to you upon completion of the project. Details will be released here also.
Thank you so much
Maybe, just maybe, this will turn out to be a big step forward in establishing the common facts of using BD in tubefeeding, and help countless people in their dealings with medical professionals who (probably rightly) insist on a bit of scientific rigour.
Certainly, this will help us all in our understanding, knowledge, and empowerment. Now please, go do the survey, and spread the word any way you can.
PS. Here's a picture of a flower. For no reason at all. :-)