Title of the Study | |
Internet use by patients with implantable defibrillators. | |
Introductory Statement |
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It is a principle of medical ethics that the human
subject participants of a research protocol be informed of the purpose and
benefits of the project; the research methods to be used; the potential
risks or hazards of participation and the right to ask for further information
at any time during the research procedure. You have the right to know
whether medical treatment or compensation is available for physical injuries
occurred as a result of participation in the project. Your choice to participate
is a voluntary one, and you are free to withdraw from the research project
at any time. Your signature at the end of this consent form will indicate
that the principal investigator, or his/her agent, has answered all your
questions and that you voluntarily consent to participate in this investigation. |
|
Researcher | |
This study is being done by Suzanne Dickerson DNS RN, a nurse researcher at University at Buffalo, School of Nursing. | |
Sources of Funding |
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None |
|
Site of the Study |
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Researcher’s password protected web site. |
|
Eligibility |
|
Persons with an implantable defibrillator who use
the Internet for support. |
|
Purpose | |
The purpose of this study is to find out how individuals, use the Internet (bulletin board, live chat or email) for support. I would like to learn about how and why you use these mediums. I hope in the future to be able to suggest uses of Internet to support people in your situation. | |
Procedure | |
I would like to communicate with you by virtual online discussion group. You will be given a user name and password to enter the secure site. You will be asked to describe experiences of how and why you use the Internet. In the discussion group you will answer the questions on a discussion list with others with ICD, like yourself who regularly use the Internet. You can post answers for other's reactions and discuss issues for a two week time frame. You will be asked to answer a few questions about your situation. You may be emailed by the investigator to clarify or expand on your stories. If you are under 18 years of age, you should obtain permission to participate from your parent or guardian by having them read this consent and email the investigator permission to join in the study. | |
Risk/Benefits |
|
I do not think you will find any question upsetting,
however, you do not have to answer any questions you choose not to.
I hope that by learning about the experience people have using the Internet,
we may be better able to help others. If you decide to join the study
you are free to drop out from the study at any time without harm. |
|
New Findings |
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You will be told of any new information or new risks
that may be found during the study that may cause you to change your mind
about joining the study. |
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Costs |
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There are no costs to you associated with this study. |
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Confidentiality | |
The information related to you will be treated in strict confidence to the extent provided by law. Your identity will be coded and will not be associated with any published results. Your code number and identity will be kept in a locked file of the principal investigator. Your names will not be included with any communication record. We will not tell others who you are. When we give results of the study at a meeting, teaching a class or in a paper your name will not be used. Any facts you gave us will be reported so that your identity will be unknown. | |
Potential Secondary Analysis |
|
In coding interviews, our team codes those sections
that are directly related to the experiences of ICD patients. We may
notice that other valuable information about what is meaningful to people
with an ICD may be present through out the interviews even though
not directly in response to our original interview questions. If we
conduct a secondary analysis of the same interviews, we would as your permission
to do this analysis on your interview. |
|
The following statement is required for all research
studies, “Routinely the University at Buffalo, State University of New York,
its agents, or its employees do not compensate for or provide free medical
care for human subjects/participants in the event that any injury results
from participation in a human research project. In the unlikely event
that you become ill or injured as a direct result of participating in this
study, you understand that you may receive medical care, but it will not
be free of charge even if the injury is a direct result of your participation.” |
By returning an email to the researcher, I indicate that I have read and understand the following:
Dr. Suzanne Dickerson
914 Kimball Tower
3435 Main Street
Buffalo, New York 14214.
Human Subject review committee
186 Farber Hall
Buffalo NY 14214.
Copy and paste the following into the email message, or print and return via mail to Dr. Dickerson at the address listed above. After we receive your email consent, we will send a reply giving you your user name, password, and URL to the web site for the virtual focus group.
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I consent to participate in the ICD internet study.
Name:
Birthdate:
Gender:
Years of education:
Hours per week usage of the Internet:
How long have you been using the Internet?
When did you receive your ICD?
Number of firings?
What other supports do you have?
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Last update: August 2002
Comments, Questions?
E-mail: sdickers@buffalo.edu