Phantom Sensation Research from Ireland

[Daren D]

Hi Everybody

I'm looking for help

I've designed a survey for people with a spinal cord injury. It's the second part of a research project where I've been looking at "phantom sensation/pain. I've made the questionnaire available here. Can you have a look and if you're interested give it a go?

I know it will take up a bit of your time so there's an incentive. I've created a 200 Euro lottery and anyone that wants to leave contact details at the end of the survey (first name and email) is entered. If you are going to give it a go fill out as many episodes as you can. Most people seem to create 3-4 in the morning, 3-4 in the afternoon and the last 3-4 in the evening (this makes more sense when you see the survey)

My name is Daren Drysdale and I'm currently a mature PhD student in Trinity College Dublin in Ireland (I went back to college because I'm a closet masochist). I'm also a psychophysiologist/biofeedback therapist and I worked for over a decade in Santa Clara Valley Medical Center's psychology/rehab department in California.

I published a paper in 2009 where I asked people with SCI about sensations below their level of injury (This is the Pubmed Entry if you want to see an abstract). Almost everyone I worked with both in the research and in the clinic, told me that they felt sensations below their level of injury and now I'd like to find out when they feel the sensations and see if they are linked to anything else.

All my contact info is in the survey but if you want more info you can post here instead.

I'll keep posting to let anyone who is interested know what's happening. If you want to you can post here and let us know how it went

Thanks for reading
Daren
P.S. There is an informed consent document at the beginning of the survey that goes into all the details about your privacy etc. and I have the clearence document from the research ethics board here in the college (IRB), just email me if you need a copy.

[Daren D]

Just to let anyone interested know we are now up to 90 people who have given the questionnaire a shot. Thanks to everyone who has given us something so far. You are part of an international group who have responded from websites based in countries like Ireland, England, Scotland, Canada ,Australia, New Zealand etc.
The survey is difficult on two levels, one it makes you think and two it's physically challenging for a lot of people (especially if they rely on a mouse stick or equivalent)
I'll be back on before we close the survey in a week or two.

[Rbrauer]

Tried to go through your survey, but it would take to long describing all the episodes of pain that occur, as it's fairly persistent.

[Daren D]

A big thankyou to everyone who has responded to the survey. We have 107 replies which is great.
Im closing the survey for responses on Friday (30th April) so if you are interested get stuck in before then.
If you find it difficult to complete we can use whatever you can do. If you leave your contact info I'll be able to put you in for the lottery.
I have to begin doing the math (I'm a psychologist...I can't even add, it'll be interesting) and I'll let you know here what I find.
Thanks again....Daren

[Daren D]

Hi Mr B

It's a long one alright

The idea behind it all is based on something an economist noticed when he was doing work on people's own view of their quality of life. He gave an example which has stuck in my mind. He noticed that when he asked parents if they enjoyed being with their children they frequently said yes but if he followed them around during the day and asked them are you enjoying being with you child at the moment, the answer was nearly always no. Big difference between their response to a questionnaire and their response when they were asked during the day while it was happening.

Instead of following them around he wondered if there was a way to capture the same information without having to trail somebody. The Day Reconstruction Method (DRM) was born. The idea is to get people to remember as vividly as possible the previous 24 hours and answer questions about chunks of that day.

We applied the idea to this questionnaire, trouble is that it’s a lot of work for the respondent never mind someone with an SCI as well....So well done if you left anything

Hope you left contact info so I can put you in the lottery

Daren