Sleep Apnea: Share your experience!                                      

Improving Care for People with OSA

 

Beth L. Rodgers, Ph.D, RN, FAAN

University of Wisconsin-Milwaukee, College of Nursing

 

I am Professor Beth Rodgers, a nurse and researcher at the University of Wisconsin-Milwaukee. I also am being treated for Obstructive Sleep Apnea.  I know from my own experience that people with Obstructive Sleep Apnea have a lot that we can share with health care providers as well as with others who have similar problems. This study is an opportunity to share your experience in the hope of helping others understand what it is like to have to live with and manage OSA.

 

I am interested in hearing from people who have experiences with breathing problems associated with sleep. People who are in any stage of this experience, whether not yet diagnosed or having dealt with the condition for a long time, have a great deal to offer about their experience. 

 

For this study, sharing your story with me will involve discussing your experience through email. If you are interested, we may talk via telephone at some point.  I also am conducting interviews with some people in person when they are willing and are in my general geographic area.  I am interested in all aspects of your experience, including sleep clinic and diagnosis, options for treatment that you considered, how you made a decision about treatment, and how you have managed the condition since diagnosis. I also am interested in any effect your experiences have had on other aspects of your life such as your work or social life.  Anything you share will be completely confidential and you will never be identified in any information that results from this study. All experiences will be grouped and discussed in general terms when the results of this study are provided in presentations or publications that I will share when this study is completed. 

 

Your participation in this research is completely voluntary. Sharing your experiences with me may help to inform others affected by this diagnosis and, particularly, health care providers to lean more about the needs and experiences of persons with sleep disordered breathing. 

 

The Informed Consent document that follows provides additional information that may be helpful to you in deciding whether you would like to participate. It is important that you read and understand this document before participating in this project as it provides detail about your involvement and your rights in this study.

 

Feel free to contact me directly by email at sleep@uwm.edu  if you have additional questions.  

Thank you!

INFORMED CONSENT

Experiences of Persons Living with Obstructive Sleep Apnea

 

 

My name is Beth Rodgers.  I am a nurse and a professor at the College of Nursing at the University of Wisconsin-Milwaukee, and I am working on a study to learn about the experiences of people with Sleep Disordered Breathing (SDB), particularly Obstructive Sleep Apnea (OSA).  There is a need to learn more about these experiences from the viewpoint of people who actually are living with this condition.  The information I gather will help health care providers understand what people think and feel, and what their concerns are when dealing with SDB and OSA. In addition, gathering information about the experiences of people with this diagnosis will be helpful to others confronting the condition and dealing with diagnosis and treatment for their sleep problem. 

 

Although we could get some information by giving you a paper and pencil type of questionnaire, we believe that corresponding directly with people who are managing their sleep problem is the best way to understand their experiences.  We will be communicating with approximately 80 people who have a diagnosis of OSA and other sleep related breathing disorders who are at all stages of diagnosis and treatment to learn about their experiences as well.

 

If you agree to participate in this study, I or an assistant, also a nurse, will communicate with you through email about your experiences with diagnosis and management of your condition.  We are particularly interested in your feelings, thoughts, and concerns related to your experience.   We also will ask a few questions about you, such as your age.  You may choose not to answer any question that you do not want to answer. 

 

Your correspondence with us regarding your sleep problem will begin with a questionnaire that you can complete and return via email. One of us then will contact you for additional information or clarification, and we will continue this conversation until we have a good understanding of your experience or until you decide not to participate any more. The length of time that we are in contact with you will depend upon how much time elapses between email exchanges. In general, I expect that email contact will last approximately two weeks.  Each email message will be saved as a text file on a computer accessible only to me and to my assistant.  We will remove any identifying information such as your name, email address, and specific details about your location, health care facilities visited, etc., before saving the file. 

 

When the study is finished, I will destroy the original messages.  Everything that you communicate to us will be kept strictly confidential and will be used only for our study. Because of the nature of the internet and email communication, however, we cannot guarantee the security of any email you send us. We will download them daily off the email server and store them securely with identifying information deleted.  If we publish what we have learned in professional journals so that others can learn from our study, we may use quotations from our correspondence as examples of what we have learned.  However, at no time will anything you say be linked with your name or any other information that might make it possible to identify you. If you prefer to remain anonymous during your interaction with us, there are some internet providers such as Hotmail or Yahoo where you can set up a free email account under a false name. 

 

I understand that the time it takes to participate in this study may be an inconvenience for you.  It also is possible that it may be difficult for you to talk about some of your experiences related to your sleep disorder.  If you need additional assistance with anything associated with your care you can contact your health care providers. We will not have any contact with anyone offering any services to you

 

Participation in this study is completely voluntary.  You may choose to withdraw from the study at any time without any penalty.  If you choose to withdraw, any information I have collected from you will be destroyed if you so desire. Your choice to participate or to withdraw will in no way affect any aspect of the care you currently receive.

 

If you have any questions now or during our communication, I will be glad to answer them.  When the study is completed, we will give you a copy of the results if you indicate you would like them.  If, after the interview, you have any question, please feel free to contact:

 

Beth Rodgers, PhD, RN, FAAN                                                         

University of Wisconsin-Milwaukee               

School of Nursing                                          

Telephone:  414/229-5466     

Email: brodg@uwm.edu                                

 

Please print a copy of this informed consent for yourself to keep for future reference.   We will ask you if you have read and understand the contents of this document before beginning communication with you. Your participation in email with us indicates your consent to be a part of this study. 

 

If you have any complaints about your treatment as a participant in this study, please write or call:

 

Benjamin Kennedy
IRB Administrator
Institutional Review Board for the Protection of Human Subjects
Department of University Safety & Assurances
University of Wisconsin-Milwaukee
PO Box 413, Engelmann 270
Milwaukee, WI 53201
414-229-3173 phone

Although Mr. Kennedy will ask your name, all complaints are kept in confidence.

 

By participating in this study you indicate that you have received an explanation of the study and agree to participate. You also agree that you are over the age of 18 and understand that your participation in this study is strictly voluntary.

 

This research project has been approved by the Institutional Review Board for the Protection of Human Subjects of the University of Wisconsin-Milwaukee for a one year period.