Share your OSA story with nurse researchers

[ConneeRNResearcher]

Share your story about OSA –

I am Connee Sloman, a Registered Nurse and PhD nursing student at Illinois State University. I am working with Beth Rodgers, a Registered Nurse and professor at the University of Wisconsin-Milwaukee, College of Nursing. We are working to learn more about what it is like to live with obstructive sleep apnea. Many people were kind enough to share their experiences with Beth when she posted an announcement previously on CPAP.com. This work is continuing, and we now hope that some more people will be willing to share their stories as well.

Beth happens to be someone who lives with OSA and CPAP therapy. She has been an active participant on this forum in the past where she found the support she needed to come to terms with her own OSA and deal with it to the best of her abilities. She is using those skills and knowledge to help others. My husband has both OSA and central apnea. I am interested in researching this area and identifying ways to improve care and quality of life.

Although there is a great deal of research available regarding various therapies, there is little information that captures the experiences of the people actually living with OSA.
We want to use our abilities as nurses and as researchers to fill this gap through a study of the experiences of people who are at various stages of living with OSA. Gathering stories from people about their experiences with OSA and its treatment will help us inform health professionals in an effort to improve the care given to people with OSA. Also, this information may help individuals who think they might have OSA but have not received the diagnosis yet.

Information regarding your experiences will be obtained through email correspondence starting with a very brief questionnaire and some continued e-conversation so we can be sure that we understand your experiences. The information obtained through this study will be completely confidential and will be shared only with health professionals and interested members of the public without identifying any individual who participated in the study. Anonymous participation is available for anyone who prefers to set up a special email account through one of the free email providers.

You are eligible to participate if you are:

Age 18 or older AND
Have either been diagnosed with OSA OR you think you may have OSA

Further information about Beth Rodgers, her background and credentials and about the study can be found at
http://www.uwm.edu/People/brodg/sleepstudy.html

If you have any questions about this study please feel free to contact Connee Sloman at clsloma@ilstu.edu or Beth Rodgers via email at brodg@uwm.edu

We appreciate your consideration and hope you will be willing to share your stories in this effort to help shape the future of health care for people with OSA.


Connee Sloman, MSN, RN, CRNA
PhD Student
Illinois State University
clsloma@ilstu.edu
Supported by:
Beth Rodgers, PhD, RN, FAAN
Professor and Principal Investigator. OSA study
University of WI-Milwaukee
College of Nursing

[Wulfman]

Hi Connee.

Welcome to the forum.

Please tell Beth (aka "ProfessorSleep") "Hello" from those of us who remember her.

Her previous post (announcement via a post from Johnny):

viewtopic/t49364/viewtopic.php?f=1&t=28300

Her profile:

viewtopic/t49364/memberlist.php?mode=viewprofile&u=2322


Den

[Bob3000]

Is this an informal study or an IRB-approved study that you plan on publishing in a scientific journal?

[howkim]

Is this an informal study or an IRB-approved study that you plan on publishing in a scientific journal?

The Informed Consent statement specifies IRB approval information "(approved 10/20/2008, #08.041, University of Wisconsin-Milwaukee, Institutional Review Board)". However, there's no way to " sign" the consent form or to move past it to anything beyond, like a questionnaire.

[ConneeRNResearcher]

Yes this is an IRB study. If you would be interested I will send you additional information. Thanks for asking. We currently need about 20 more individuals.

Connee

[ozij]

Another "Hi" to ProfessorSleep, from someone who remembers her!

O.

[BlackSpinner]

Yes but HOW does one actual sign up to be part of the study. I see lots of email address for problems but no where does it say in big letter "Click here to join" or "Email this address to sign up"

[Fred D]

I clicked on the link in her first post and went to where the study was described. I sent an email to the address I found there describing my history with apnea but haven't heard back from anyone. I must not meet the criteria for study but would be nice to get at least a "thanks but
no thanks".

[JohnBFisher]

... If you would be interested I will send you additional information. Thanks for asking. We currently need about 20 more individuals. ...

I responded via email, but got no reply. Are you interested in my long and sordid story? Or would it be too much for someone to try to summarize?

[ProfessorSleep]

I want to thank the many people who have replied to our posting regarding their experiences with OSA. I am Beth Rodgers, and just wanted to share with you why there might be a delay in my responding to e-mails sent to me. I believe that Connee is responding to people very quickly. Several of you replied to my address and it is taking me a little while to get back to you all. I shattered my wrist a couple of weeks ago, a hazard of Wisconsin winters, and of course it was my right wrist and I am very right-handed. As a result, my typing is limited to the use of my left hand only. for faster response I am forwarding some of your e-mails to Connee as it is taking me too long to type a reply. I'm grateful to be working with Connee in this process who is fortunate to be able to type much faster than I. Please know that if you have responded to this invitation to participate that we are incredibly grateful for your willingness to share your story. also, I want you all to know that I am working closely with Connee and I will be reading and benefiting from everything that you all have to share. I have had the incredible experience of talking with or corresponding with close to 60 people so far and the stories that they all share have a tremendous amount to offer in an effort to gain a better understanding of the experience of living with OSA. and as you all know from the original announcement, I live with OSA myself, and I feel privileged to be in a position to hear all of your stories and to be able to use that information to help improve care for all of us. I appreciate your patience if I might respond a little more slowly than I would like-I'll certainly be grateful when I had to use my right hand again! for the present, however, please know how much I value your willingness to participate and how much I look forward to hearing each of your stories. With tremendous gratitude -- Beth

[ProfessorSleep]

I was so intent on posting an explanation for my delay in responding that I neglected to mention all of you who said Hi! as you can see by this thread the study is still in progress and I got some incredible information that I know will make a huge difference in how healthcare providers work with people with OSA and in helping those people both before and after diagnosis insure that they receive the best care possible. I'm grateful that so many of you for having shared your stories previously and, for those of you who requested, you will get a copy of the results of the study is finished. As you can see by this thread I am approaching the end of data collection and expect to have the study fully completed by the end of summer-my ability to resume typing with two hands will surely help with that! thank you to those of you who participated previously and to those of you who have offered your assistance with this recent request. I also want to express my appreciation to Johnny for allowing me to post my message about my study in this forum.

[OutaSync]

I volunteered my story, too, and never got a reply. Has anyone heard from them?

Bev

[ProfessorSleep]

Bev, please read my posts above as to why it is taking a little time to reply. I have a broken wrist so my typing is a little impaired at the moment. We also had a good response (though still want to hear from more of you!). We are catching up, slowly but surely. I appreciate everyone's patience. Beth Rodgers, PhD, RN, FAAN

[BleepingBeauty]

I volunteered my story, too, and never got a reply. Has anyone heard from them?

Bev

Yep. I emailed Connee on 2/20 and heard back from her the same day (with the questionnaire attached).

[OutaSync]

Sorry, Beth. I didn't mean to make you have to type out another reply. I do understand about the broken wrist and I'm sorry that you are having to go through that.

Thanks, BB. I'm glad that your story is getting told. I'm not sure I can remember all of mine! Good thing we have our long threads to remind us.

Bev