College Students needed for a study on students with IBD (approved post)

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hefud
Regular Member


Date Joined Sep 2009
Total Posts : 60
   Posted 2/17/2010 11:26 AM (GMT -7)   
Dear all,

First, I want to let everyone know that I emailed Peter and he has approved this message for posting.

I joined the forum last semester, but have not be active (esp. lately) and in talking with a college student on here it inspired me to do some research about college students with IBD. I am a professor of higher education (I study colleges & college students) and this semester in a course of mine we are learning to do qualitative research. My class has agreed to help me with a future study by doing a pilot study on students with IBD as their main class project.

In order to complete this study, I need to find 5-6 college students with IBD that would be willing to conduct a 1 to 1 and 1/2 hour phone interview with myself or one of my graduate students. We will call you so it will not cost you. Due to university restrictions we can not work with minors so you must be at least 18 years of age to participate. We will keep your identity confidential and you will have the ability to review your transcript and make changes before we use it as data.

If you know anything about the university rules surrounding human subjects and want to know more, this pilot study is for a learning purpose only (not intended for publication) and as such it does not require going through the Institution Review Board process. So it adheres to common university standards in the US.

This study is about being a college student with IBD and will help the research group develop a survey that we will later also need volunteers for.

If you are interested in participating please email Stacy at ibdcollegestudy@gmail.com. This way we can keep our identities anonymous on the boards and still communicate about the study.
39 year old female with UC diagnosed at age 17.
Currently flaring, taking Asacol 3x a day and a nightly Rowasa enema.


pez927
Regular Member


Date Joined Feb 2010
Total Posts : 67
   Posted 2/18/2010 9:39 AM (GMT -7)   
I dont know if you are interested but I am not a college student due to the fact I have been too sick all my life to go to college. I even had to go to high school longer than most just to graduate.
 
I am a 39 year old female who has had Crohns Disease for over 25 years and has more experience than you will ever know.
 
Heres a little run down for you and remember all of the following has been because of the Crohns.........
 
appendix gone, gall  bladder gone, complete hysterectomy, 2 ports in my chest, tmj surgery where I flatlined had a stroke died saw the other side as they call itwas in a coma for 4 days and then had to relearn how to talk again cause I had a stroke on the table, I was also severely burned on my back due to the paddles they use to bring a flatlined patient back ,have such servere osteoporosis that I just got out of the hospital with 10 broken ribs, I have had 28 inches of my bowel removed due to obstruction, lost my husband who couldnt take the disease anymore, lost my house cause I couldnt make the payments anymore,I used to weigh like 100 pounds I now have diabetes which has made me gain weight and I now weigh 211 and hate myself to death, I also have high blood pressure as high as 180 over 120-125 stroke material I know. I am addicted to my pain pills cause I am in pain everyday, I do take my reglular meds but dont know how long  they will keep working for me.I also have had 8 hernia surgeries. There are more things but it could take all day talking about tripping in the parking lot of the grocery store and breaking my shoulder, etc...but if you are interested and have some questions maybe we can talk but I do get tired very easily. I am a veteran Crohns patient so I do not have as much energy as a young patient which may be what you are looking for. Take care all my Crohnies...  

hefud
Regular Member


Date Joined Sep 2009
Total Posts : 60
   Posted 2/18/2010 2:47 PM (GMT -7)   
Thanks for the reply and as a person with UC, I ache to hear that CD has made your life hard.

This study has to do the with the realities of of try to complete any type college degree (Associates, Bachelors, Masters, Doctorate) with an IBD. There is no research out there to help college administrators help students and so it could be very important. I appreciate any respondents.
39 year old female with UC diagnosed at age 17.
Currently flaring, taking Asacol 3x a day and a nightly Rowasa enema.


debilitated
Regular Member


Date Joined Jan 2010
Total Posts : 448
   Posted 2/18/2010 3:14 PM (GMT -7)   
im 22, been trying to get my degree for awile. Problem is, Im to sick to not only afford college.. But even Online Courses. Just cant afford it. Can't Get financial Aid...

dodger84
Regular Member


Date Joined Jan 2008
Total Posts : 37
   Posted 2/18/2010 5:03 PM (GMT -7)   
I'm a PhD student right now and would be willing to answer some questions but I do not envision a 1-1.5 hour block available for helping on the phone.  If we could do something via email or some other means I would be willing to participate.  I agree that there need to be more resources for college students with IBD - I have applied for several fellowships and have been told that I do not have any diverse life experiences to warrant receiving funds even after writing about balancing school and Crohn's.  Maybe if people were aware that it is not easy they would see this as a diverse life experience in the future and somebody else in my position would have the opportunity to have an easier time financially while in college or graduate school.

hefud
Regular Member


Date Joined Sep 2009
Total Posts : 60
   Posted 2/18/2010 6:08 PM (GMT -7)   
debilitated--You would be a great person for us to talk to, please email me if you would like to participate.

dodger84--we would ideally like to talk to folks on the phone so it does not compromise the research. Could we talk to you for as long as you are willing? If not perhaps we can collect some info via email. Please email me if you are willing to help.

Thanks all! I really want to start to lay the groundwork for understanding students with disease so that they can be better served in the academy.
39 year old female with UC diagnosed at age 17.
Currently flaring, taking Asacol 3x a day and a nightly Rowasa enema.


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 2/18/2010 8:05 PM (GMT -7)   
Which academy?
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


hefud
Regular Member


Date Joined Sep 2009
Total Posts : 60
   Posted 2/19/2010 7:58 AM (GMT -7)   
When I said the academy I was referring to colleges in general. Sometimes in our field we refer to to all of higher education as "the academy." Sorry to be jargony and confusing!
39 year old female with UC diagnosed at age 17.
Currently flaring, taking Asacol 3x a day and a nightly Rowasa enema.


sickandlucky
Regular Member


Date Joined Oct 2009
Total Posts : 253
   Posted 2/19/2010 8:20 AM (GMT -7)   
I might be able to do this, I am 19 almost 20 and a "full-time" student (but only taking 3 classes at the moment... slow and steady!) It's been a challenge, hopefully people will start to understand how hard it can be at times so we can catch a break every now and again!
female 19, diagnosed crohns december 2008
entocort/pentasa previously, now prednisone(tapering) & 100 mg imuran, probiotics, calcium w/d3, biotin, folic acid, zinc, omega 3s, digestive enzymes & prenatal multivitamin


hefud
Regular Member


Date Joined Sep 2009
Total Posts : 60
   Posted 2/19/2010 1:38 PM (GMT -7)   
sickandlucky-We would love to have your help. If you would like to participate email ibdcollegestudy@gmail.com. I will send you details!
39 year old female with UC diagnosed at age 17.
Currently flaring, taking Asacol 3x a day and a nightly Rowasa enema.


mkl11
Regular Member


Date Joined Jul 2007
Total Posts : 494
   Posted 2/21/2010 11:48 PM (GMT -7)   
As a university student who actively conducts research on human subjects, I'd like to know your affiliated institution, as well as how you plan to store and secure our personal information. I realize this is just a pilot study, but since I do my own research, I'm particularly concerned about privacy and aware of the issues surrounding research, especially work in the medical area. Will our name and contact information be disassociated with the data collected? I would be less concerned with a short survey, but an hour and a half interview is quite extensive. I participate in another longitudinal study on Crohn's, and I'm all about research, but I'd like a bit more information before getting in touch with identifiable information.
21 y/o, diagnosed 6/2007

Symptoms currently under control with Humira and a wheat-free, processed food-free diet. Beginning to have symptoms of GERD...


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 2/22/2010 7:38 AM (GMT -7)   
I agree with mkl11. I'm all for research, but I need more info before I can agree to participate.

sickandlucky
Regular Member


Date Joined Oct 2009
Total Posts : 253
   Posted 2/22/2010 8:33 AM (GMT -7)   
Ditto mkl11... I'm involved in a lot of research through my school (though it's more psychology related) so I'm familiar with research methods but I'd like to know more before I contact you.
female 19, diagnosed crohns december 2008
entocort/pentasa previously, now prednisone(tapering) & 100 mg imuran, probiotics, calcium w/d3, biotin, folic acid, zinc, omega 3s, digestive enzymes & prenatal multivitamin


hefud
Regular Member


Date Joined Sep 2009
Total Posts : 60
   Posted 2/23/2010 8:36 AM (GMT -7)   
mlk11 & bookworm21-

I am happy to provide all of this information and and am currently putting together information to send out to everyone who has said they would participate. However, here is that information in a nutshell.

Interviews will be recorded and transcribed. When we interview each participant we will ask for a pseudonym. In the transcription, we use only your pseudonym. After the the transcription is complete the original recording will be destroyed and so you can not be associated with the data once the original recording is destroyed. Until recordings are destroyed (aka as they are being transcribed--it takes a few days) they will be maintained in a locked safe or drawer (ones that are recorded on tapes) or a computer locked with a password (ones that are recorded into WAV files). When we transcribe the interview we will mask any information that we think might identify you. For instance if you said, "I am a student at the University of Michigan." We would change that to "I am a student at a large Midwestern Research institution." You will then be sent the transcript of your interview. You can alert us to change or remove anything you said that might identify who you are. At this time you are also welcome to correct your grammar if you like.

We can not assure you anonymity because we will have talked to you and as researchers we have some clue to your identity; however, we will keep your information confidential. Once the original transcript recording is destroyed there will be no link back to you. I will maintain a list of the participants not linked to the data (in case we want to recontact you for future study) in a locked file cabinet in a locked office. All of this is standard procedure for qualitative research. Please let me know if you have any other questions.

I am happy to reveal my institution and name if you agree to participate by contacting ibdcollegestudy@gmail.com. I work in a very small program and it would be very easy for folks to identity me if I publicly give out this information. As a member of the HW community, I would like to maintain my public anonymity as much as I can. I realize that by doing this study, I will need to reveal my self to participants and they would need to reveal themselves to me. So confidentiality is of the utmost importance to me and it is my hope that we can extent it to one another.
39 year old female with UC diagnosed at age 17.
Currently flaring, taking Asacol 3x a day and a nightly Rowasa enema.


hefud
Regular Member


Date Joined Sep 2009
Total Posts : 60
   Posted 2/23/2010 8:59 AM (GMT -7)   
Also this study is for a class and will never be published. The students in my class are learning how to do qualitative research and write it up. We will also be using the data to develop a quantitative study.
39 year old female with UC diagnosed at age 17.
Currently flaring, taking Asacol 3x a day and a nightly Rowasa enema.

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