Consent Form (Please READ and SCROLL all the way to the bottom of this page):
Please read the following regarding the research project you are about to participate it and indicate your consent in the bottom of the page before proceeding. You will need to scroll all the way down.
Research Project Title:
Development of a Computer-Based Screening Test to Support Evaluation of Cognitive Impairment and Dementia
(Part 1D-Understanding the Effect of Culture on Computer Use)
Principal investigator:
Claudia Jacova, PhD, 604-822-7540
Co-Investigators:
Shathel Haddad, MSc Student, 604-773-8269
Joanna McGrenere, PhD, 604-827-5201
Charlotte Tang, PhD, 604-827-3983
In this study, we aim to acquire a better understanding of cultural differences when users take a cognitive test on a computer. You are being invited to participate in this study because you use a computer regularly at home and are free of cognitive and motor impairment to your hands. You can help us by using a computer application and providing feedback on your use experience.
Your participation in this research study is entirely voluntary. This consent form, a copy of which can be printed here, is only part of the process of informed consent. It should give you the basic idea of what the research is about and what your participation will involve. If you would like more detail about something mentioned here, or information not included here, you should feel free to ask. Please take the time to read this carefully and to understand any accompanying information.
If you wish to participate, you will be invited to provide your consent but you should understand that you are free to withdraw your consent at any time and without giving any reasons for your decision.
Who Is Conducting this Research?
This research is conducted by a team of Investigators from UBC Computer Science and the Division of Neurology, Department of Medicine.
Purpose:
The purpose of this research is to acquire a more in-depth understanding of cultural differences when users take a cognitive test on a computer. We are investigating whether cultural variation regarding attitudes about uncertainty would affect performance on the test and satisfaction with its interface.
Procedure:
This study should require up to thirty minutes of your time. You will be asked to use a computer program to perform cognitive activities such as matching figures and making sentences. You will be asked to fill some questionnaires before using the program as well as answer some interview questions about your experience after. These questions are designed to collect data about your cultural profile, anxiety levels and satisfaction with the computer testing interface. Your test performance will be recorded as well. In all circumstances, you may refuse to answer questions that you are not comfortable with.
Objective:
The research objective is to inform and refine the design of a computerized program that is intended for cognitive health care purposes and is to be used by individuals with various cultural backgrounds. To achieve this, we need to first understand the effect of cultural differences -if any- on test performance and satisfaction with its computer interface. With this understanding we can continue to design effective and usable health care technologies which are culturally appropriate.
What are the Possible Harms and Side Effects of Participating?
You may experience fatigue from performing the computer tasks and answering the questions.
What are the Benefits of Participating in this Research?
There may be no immediate, direct benefit to you as a result of participating in this study. However the findings from this study can help us improve future health care technologies for use in domestic environments that may benefit you, your family members and the community in the longer term.
What Happens If I Decide to Withdraw My Consent to Participate?
Your participation in this research is entirely voluntary. You may withdraw from this study at any time, and are not required to provide any reason for withdrawing. If you choose to enter the study and then decide to withdraw at a later time, all data collected about you during your enrollment in the study will be retained for analysis. By law, these data cannot be destroyed. If you wish to withdraw your consent, we ask that you notify Dr. Claudia Jacova at 604-822-7540 or Shathel Haddad at 604-773-8269.
What Happens If Something Goes Wrong?
Signing this consent form in no way limits your legal rights against the sponsor, investigators, or anyone else, and you do not release the study doctors or participating institutions from their legal and professional responsibilities.
Will My Taking Part in this Study be Kept Confidential?
Your confidentiality will be respected. However, research records and health or other source records identifying you may
be inspected in the presence of the Investigator or his or her designate by representatives of the UBC Clinical Research Ethics
Board for the purpose of monitoring the research. No information or records that disclose your identity will be published
without your consent, nor will any information or records that disclose your identity be removed or released
without your consent unless required by law.
You will be assigned a unique study number as a subject in this study. Only this number will be used on any research-related
information collected about you during the course of this study, so that your identity [i.e. your name or any other
information that could identify you] as a subject in this study will be kept confidential. Information that contains
your identity will remain only with the Principal Investigator and/or designate. The list that matches your name to the
unique study number that is used on your research-related information will not be removed or released without your consent
unless required by law.
Your rights to privacy are legally protected by federal and provincial laws that require safeguards to insure that your
privacy is respected and also give you the right of access to the information about you that has been provided to the sponsor
and, if need be, an opportunity to correct any errors in this information. Further details about these laws are available on
request to your study doctor.
Who do I Contact if I have any Questions or Concerns about the Study?
If you have any questions or desire further information with respect to this research, you should contact Dr. Claudia Jacova at 604-822-7540 or Shathel Haddad at 604-773-8269. If you have any concerns about your rights as a research subject and/or your experiences while participating in this study, you should contact the Research Subject Information Line at the University of British Columbia's Office of Research Services at 604-822-8598, toll free 1-877-822-8598, or email RSIL@ors.ubc.ca
Subject Consent to Participate:
- I have read and understood the subject information and consent form.
- I have had sufficient time to consider the information provided and to ask for advice if necessary.
- I have had the opportunity to ask questions and have had satisfactory responses to my questions.
- I understand that all of the information collected will be kept confidential and that the results will only be used for scientific objectives such as research and publications.
- I understand that my participation in this study is voluntary and that I am completely free to refuse to participate or to withdraw from this study at any time.
- I understand that I am not waiving any of my legal rights as a result of signing this consent form.
- I understand that there is no guarantee that this study will provide any benefits to me.
- I have read this form and I freely consent to participate in this study.
- I have been told that I can print a copy of this form.