IBD and Well-being On-line Study

[reitersgal]

Hello! I am researcher from the University of Windsor looking for people with inflammatory bowel disease (IBD; Crohn’s disease and ulcerative colitis) to participate in an online study about how your present, past, and future self-perceptions influence your well-being and adjustment to IBD. Living with IBD may change how you view yourself and your future plans. This study focuses on understanding how people with IBD deal with these challenges. An additional focus of this study is to explore how social support, including the type received from an on-line support board such as Crohns Forum, affects self-perceptions and adjustment to IBD.

This is the first of a two-part study and anyone who participates in this study will be eligible to be invited to participate in the second follow-up study in approximately six months. As someone who also lives with an autoimmune disease, I have tried to make the content of the survey as meaningful as possible and I hope that by completing it you will learn something about yourself and coping with IBD. I will also produce a report with the study’s results for all participants that should be available by the end of 2007.

The survey takes approximately 30 to 45 minutes to complete. By participating you will also be given the chance to win one of several gift certificates from a major on-line book seller worth $30 CDN, or the USD or Euro equivalent. The odds of winning are about 1 in 10 to 15.

Your responses will of course remain confidential and only the researchers involved will have access to the information you give. This research has been approved by the University of Windsor Research Ethics Board.

I Invite you to read over the consent form on the study website which provides further details about the study:

www.uwindsor.ca/IBDstudy

I am also happy to answer any questions you may have about the study here.

Thank you!
Fuschia :smile:

 

[pb4]

I did this survey (on another board I visit) and it was a pretty good one...finally someone who cares what this horrid disease does to our mind/emotions and not just the physical aspect of it.

 

[marcia]

I just took this survey mostly out of curiousity, but it helped me to see just how angry I tend to be at times because of Crohns. If nothing else it helped me to see that I have a lot of negative feelings regarding my illness.

 

[mikeyarmo]

Fuschia has been granted permission to post this offer here, and I hope that everyone tries to take advantage of it. This research ends up benefiting all of us in the end, so it is important that we can help the researchers collect as much data as possible.

 

[mikeyarmo]

Just wanted to let everyone know that I am about to do the study, and would recommend that everyone do it also. This is research that will be able to help others with this disease and those trying to help treat people with IBD, so your time is definately appreciated.

 

[reitersgal]

I just wanted to say thank you to everyone who has taken the time to participate in this on-line survey - your thoughtful responses are greatly appreciated. And thank you Mike for your support of this project.

The study is still open and we will start making the draws for the first series of giftcards by mid June. However, we stil need a few more people to participate in this study, and we would greatly welcome your participation. And if you know of anyone else who would like to share how IBD has affected their lives and their sense of self (for better or worse), I would greatly appreciate you passing along the study link to them:

www.uwindsor.ca/IBDstudy

Thank you!

 

[Cara Fusinato]

And I actually laughed at the beginning when I read in the disclaimer:

"POTENTIAL RISKS AND DISCOMFORTS
Some people may experience some mild discomfort when asked to focus on their current, past or future health, and/or any stress they may have experienced with regards to their illness."

I was actually hoping the final question would be: How many times did you burst into tears while taking this survey? Yep. Knocks down the most cavalier of us.

Truly -- I think everyone on this message board needs to take this. It really gets you to look at yourself and how you are really coping and feeling, when you strip away the facade.

Mike -- I hope you get a copy of this, strip down the duplicates, and make available a mini-version of this after the study ends. Fuschia -- please make a short version of this available as a link on this site. Current and future chronies need to take this just to see where they really stand. While we know we need to look at this, we hide from it.

If you haven't taken the survey, don't let me scare you. It's really good and really does as the right questions. Take it! If we have a copy of this, we can take it annually and examine how we are doing.