Got an email requesting I post information about a girl in Australia who is doing a study about headache sufferers and online support group.  Please consider helping her out!

Hello,

My name is Elise Candy and I am a psychology honours student at Griffith University, QLD, Australia. I have been a headache sufferer for many years and I am currently conducting research into the use of online support groups for headache disorder sufferers in conjunction with my supervisor Professor Paul Martin, a prominent researcher and clinician in the headache disorder field and head of school here at Griffith University.

I am writing to you as the moderator of this particular online community, to ask permission to post a voluntary survey for those members who might be interested in participating in my research.

The title of my research project is "Testing a model for online support group use, empowerment processes and psychosocial outcomes for headache sufferers." The aim of this project is to determine how accessing headache support groups online impacts on the individual in terms of personal empowerment and its relationship with various psychosocial outcomes, including coping with headaches, self-care self-efficacy in headache management and health-related quality of life.

We believe that this project is important because it will help develop an understanding of how using online support groups empower headache sufferers in terms of headache management, their own personal resources and coping strategies and quality of life. We also believe that community members might find participating in this research beneficial, with the potential for increased understanding of one's own coping resources and the potential empowerment processes associated with using such online headache support groups as this.

There will be no identifying information obtained from members of your community, and if requested, preliminary results from the study can be provided back to you and your members by the end of this year as well as the possibility of published research findings.  If you need any more information about the aims, methods or measures of the current study, please do not hesitate to contact me on my email: elise.candy@griffithuni.edu.au If permission is granted we will provide members of the community a link to the online survey, as well as information about the purposes and requirements of the study so that they can make an informed decision as whether to participate or not. We believe there are no aversive consequences for participating in this study, and as already mentioned benefits in terms of highlight personal resources, skills and coping strategies. The survey should only take maximum 15 minutes to complete.

I've included a link to the online survey for you to have a look at.

Thanks very much for your time and hoping to hear from you soon! Your help in this research project would be very much appreciated!

Kind Regards, 

The Research Team

Elise Candy and Professor Paul Martin
See linked website for researcher credentials START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

SURVEY LINK: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Done!

Interesting survey.  It applies more to migraine in some areas than to cluster, but I can definitely see where it has value.  It was worth the 10 mins it took.

Jerry

I totally agree with Jerry's comments. This is a very well designed survey and I'm looking forward to seeing the results.

Done.

Best,

George

I finished it.  Wish the word Migraine wasn't in this because once again...we'll be lumped in with them and the answers are going to be so different, much less the results of this survey/test.

Done!

Completed.

-Gregg in Las Vegas

Did and done. Expecting six-pack by return mail.

Done

Done, done and done.

Didn't take it because based on the criteria I did not meet it.  Have not had at least 1 headache a week for the last six months - thank the lord.

Think the comment about this being for migranes versus clusters is valid.  These studies, to be helpfull, need to be focused.  Don't want to cloud the results.

Great survey.  I wouldn't worry about the migraine thing, because they specify what type of headache you primarily suffer from, perhaps they're trying to discern if online support groups help some types of headaches more than others.  My guess is that they help CH a lot more than other headaches, because they are more rare and more painful.

Katherine is right.  The purpose of the survey is to gauge the value of Online Support Groups, not the HA's themselves.  I emailed Elise about the  difference in CH and Migraine and how some of the questions did not really fit us.  She recognized the differences and was very nice in her response saying they didn't have a good way to differentiate in the survey.  She seems to be a very sharp young lady, and I hope she is able to get the response she needs.

Jerry

OK - I took the survey.  Only thing that confused me was how to answer some of the questions about dealing with the pain.  For me - as I said before - the imetrix always works after a short period of time.  If (and when) I didn't have any many of my answers on that subject would have been different.