INFORMATION AND CONSENT

The purpose of this study is to learn whether people diagnosed with cancer experience social stigmatization or discrimination in Newfoundland and Labrador (NL) because of their disease. If so, we are also interested in how common these experiences are; who stigmatizes or discriminates them; and what impacts occur in patients’ lives as a result.

If you have been diagnosed with cancer, are 18 years or older, and have lived in NL at anytime since your diagnosis you are eligible to take part in this study. The information you share will help us better understand the social factors that affect the experiences of cancer patients.

The purpose of this first page is to provide you with more information about the study so that you can decide whether you want to take part. Please read this carefully, then proceed when you are ready.

Taking part in the study is completely voluntary. It is up to you to decide whether to be in the study or not. If you decide to take part and complete the survey, you are free to stop at any time. Taking part in this survey will not affect any health care which you receive.

The survey should take about 20-25 minutes to complete. Please note that there are no right or wrong answers; we are only interested in your opinions. If you come to a question that you do not want to answer or do not understand, you can skip it.

Participants will have the option to enroll in a draw for a chance to win one of 20 gift cards worth $25 each.

Risks and Discomforts
There are no expected risks and discomforts to taking part in this study. However, some people may find it difficult or stressful to think about their cancer-related experiences.  If you experience any difficulty and need help, we encourage you to call the Mental Health Crisis Line at 1-888-737-4668 (24 hours).

Privacy
Protecting your privacy is an important part of this study. Your answers will be anonymous. No identifying information such as your name, email address or IP address will be collected in the survey. However, if you choose to participate in the gift card draw, your name and contact information will be collected. Information collected for the draw will NOT be linked to your survey responses. This information will be handled independently by the Health Research Unit (Faculty of Medicine) and will not be shared with anyone, including the study primary investigators and co-investigators.

Please do not refer to yourself or other people by name. If you accidentally do identify yourself or another individual, we will remove that information in order to safeguard confidentiality. Your name will not be recorded or used in any papers or reports prepared from the survey data.

The on-line survey company, Survey Monkey, hosting this survey is located in the United States. The US Patriot Act allows authorities to access the records of internet service providers. Therefore, anonymity and confidentiality cannot be fully guaranteed if you choose to participate in this survey. However, ONLY the information you provide in this survey will be stored and may be accessed in the US. Your computer IP address or email address will NOT be automatically collected.
Access to your records
Since the survey will be completed anonymously, we are unable to provide you access to records of your survey responses once it has been collected. If you decide to withdraw from the study, the information collected up to that time will continue to be used by the research team. It may not be removed. This information will only be used for the purposes of this study.


Use of your study information
The research team will collect and use only the information they need for this research study. Information collected for this study will be kept for five years and will only be used for the purposes of this study. Information collected and used by the research team will be stored in a secure office in the Faculty of Medicine at Memorial University. Dr. Sevtap Savas is the person responsible for keeping it secure.


Names and contact information collected for the prize draw will be secured and retained by the Health Research Unit in the Faculty of Medicine. This is necessary for auditing purposes.

Questions or Problems?

If you have any questions about taking part in this study, you can contact the investigator who is in charge of the study. That person is:

Dr. Sevtap Savas
Memorial University of Newfoundland
Phone: 709-864-6507 or Email at savas@mun.ca

You can also talk to someone who is not involved with the study at all, but can advise you on your rights as a participant in a research study. This person can be reached through:

Ethics Office
Health Research Ethics Board
Phone: 709-777-6974 or Email at info@hrea.ca

Continuing with this survey indicates you consent to be in this study. It tells us that you understand the information about the study. By taking part in this study, you are not giving up your legal rights. Researchers or agencies involved in this research study still have their legal and professional responsibilities.
Click "Next" if you agree and to begin the survey.

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