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University of Michigan
Information Sheet for a Research Study

 

Name of Study and Researchers
 

caregiver disclosure of illness status to children with malignancies:

A pilot study

 

HUM00092388, HUM00113302

 

Principal Investigator:

Gregory Yanik, M.D.

 

Study Team:

Rajen Mody, M.D., Kris Kullgren, Ph.D., Flora Hoodin, Ph.D., Michelle Byrd, Ph.D., Rachel Kentor, M.S.,
Lauren Ostarello, M.S., 
Casiana Warfield, B.S.

 

GENERAL Information
 

We’re doing a research study to learn more about what, when, and why primary caregivers tell their children with cancer about their illness. A primary caregiver is the person who provides most of your child’s medical and general daily care, including emotional and social needs. The survey is divided into three sections: background information about you and your child, what you have told your child, and how you and your child are coping emotionally. We expect it to take about 25-30 minutes to complete the survey.

 

Your survey responses will be completely anonymous. No one will know whether you took the survey or not or what your answers are. Your anonymous data may also be used in future studies.

 

Answering this survey is voluntary. You don’t have to answer it if you’d rather not. You can skip any questions that you don’t want to answer, whatever the reason, and you don’t have to tell us why. 

 

It’s possible that some of the questions may make you feel uncomfortable. If a question makes you uncomfortable, you can just skip it and go to the next question.

 

We understand that some questions may be upsetting to some.  If you would like to speak to someone about your feelings, please use the contact information provided at the end of the survey.

 

Answering our survey won’t benefit you directly. We hope what we learn will help other people in the future.

 

 

Contact Information
 

To find out more about the study, to ask a question or express a concern about the study, or to talk about any problems you may have as a study subject, you may contact one of the following: 

 

Principal Investigator: Gregory Yanik, M.D.

Mailing Address:

Professor of Pediatrics and Communicable Diseases

University of Michigan

5111 Medical Professional Building

Ann Arbor, MI 48109-0914

Telephone: (734) 764-8360

Email: gyanik@med.umich.edu


Co-Investigator: : Flora Hoodin, Ph.D.

Mailing Address:

Adjunct Clinical Associate Professor

Department of Psychiatry

University of Michigan

1500 East Medical Center Drive

F6328 MCHC/Box 0295

Ann Arbor, MI 48109-0295

Telephone: (734) 936-8269

Email: fhoodin@med.umich.edu

 

 

 

 

You may also express a concern about a study by contacting the Institutional Review Board:

 

University of Michigan Medical School Institutional Review Board (IRBMED)
2800 Plymouth Road
Building 520, Room 3214
Ann Arbor, MI  48109-2800
734-763-4768
E-mail: irbmed@umich.edu

 

If you are concerned about a possible violation of your privacy or concerned about a study, you may contact the University of Michigan Health System Compliance Help Line at 1-866-990-0111.

 

 

 WHAT TO DO IF YOU WISH TO TAKE PART IN THIS STUDY

 

If you would like to take part in this study, click “CONTINUE” below and begin the survey. By doing so, you acknowledge that you have read this information and agree to participate in this research.
If you begin the survey and are unable to finish it all at once, click the "SAVE AND CONTINUE" button (available on every page) to save your progress and finish the survey at a later time.

 

 

If you do not wish to take part in this study, click "NOT INTERESTED" below to end the survey.