SurveyMonkey Powered Online Survey

Welcome

The purpose of this survey is to learn more about the sleep routines, disturbances, and barriers to sleep supports that individuals with SCI experience, as well as the impacts of sleep problems on daily life.

Many individuals with SCI report poor quality sleep. However, we do not know enough about the problems experienced or how to best manage them. This survey will ask about sleep quality, sleep routines (i.e., turning), and sleep problems (i.e., sleep apnea, neuropathic pain, autonomic dysreflexia) as they present in the nighttime. We will also ask how your sleep affects your quality of life.

Individuals living with SCI everyday are the experts in this area. If you are living with an SCI, are over 18 years old, and live in Canada, we invite you to take this survey. Your contribution will provide important insight into the sleep challenges post-SCI and help direct future research towards the sleep factors that matter most.

Survey Expectations:
· This survey is estimated to take 30 – 45 minutes to complete. Skip logic has been integrated so that you will only be shown questions for the sleep disturbances that you indicate.

· Please do not close the page before you are done with the survey as your answers will not be saved until the survey is submitted. If not complete in one sitting, the page can be left open until you return to it

· Due to the skip logic, some pages may take longer to load than others after clicking “next”.

· You may complete this survey on a mobile device (cell or tablet), but the survey is best suited for the desktop/ laptop interface.
On the keyboard, the "TAB" key moves the cursor down, arrow keys move the cursor left and right, and "return/ enter" selects the option.

Who is conducting this study?
This study is led by Dr. Victoria Claydon Ph.D., a Professor with the Department of Biomedical Physiology and Kinesiology, Simon Fraser University (SFU). Dr. Claydon is also a Principal Investigator with the International Collaboration On Repair Discoveries (ICORD), and an Affiliated Investigator with the Vancouver Coastal Health Research Institute. Dr. Claydon will be assisted by Rebekah Lee, a PhD student in her laboratory.

Participation is voluntary.
Your participation in this survey is completely voluntary. There will be no consequence for you if you are not interested in taking part in the survey. If you do consent to the survey you do not waive your rights to legal recourse in the event of research-related harm. If you wish to participate but do not want to answer certain questions, you are free to skip them and complete only what you feel comfortable with. Completion of this survey will mean that you consent to participate in this project and that the research team is able to include your responses in the data analyses.

How is confidentiality ensured?
This survey will be anonymous in nature. We will not collect personal information that will disclose your identity (i.e. name; date of birth). The SurveyMonkey application and data are hosted in the Canadian data centers of SurveyMonkey Canada. However, SurveyMonkey is a US owned company and any data you provide may be transmitted and stored in countries outside of Canada. It is important to remember that privacy laws vary in different countries and may not be the same as in Canada. Throughout analyses, data will be stored securely in Dr. Claydon’s research laboratory, and only research staff will have access to this information.

What if I need help to complete the survey?
If you would like help with completing the survey or using the online interface, please contact us for assistance (rebekah_lee@sfu.ca). A member of the research team can arrange to phone you at a convenient time and record your answers to the survey questions on your behalf. If you choose this option the researcher will obviously be aware of your responses, but no personal information will be collected about you, in the same way as if you completed the survey online.

Who do I contact if I have questions?
· If you have any questions or concerns about this survey before or during participation, please contact Dr. Victoria Claydon (Email: victoria_claydon@sfu.ca; Phone: 1-604-735-8235).
· If you have concerns about your rights as a participant and/or your experience while completing the survey, please contact the Director, Simon Fraser University Office of Research Ethics at dore@sfu.ca or 778-782-6593.

Can I find out about the results?
We plan to publicly share the results of our study with the SCI community by writing summary reports or information leaflets that will be made available online and shared with our community partner, Spinal Cord Injury British Columbia. We also plan to share our results with the scientific and medical communities by publishing a research article and presenting our findings at science conferences. Rebakah Lee will also include the survey results in her thesis. In all forms of research dissemination, all results will be presented collectively, as a group. If you would like to learn about the results of the study when it is finished, please follow the link at the end of the survey to provide your email so we can send you a summary of our findings.

Honoraria:
As a thank you for your time, participants will receive $15 via e-transfer. At the conclusion of the survey, participants who wish to receive the honoraria be asked to email a member of our research team (Rebekah Lee, rebekah_lee@sfu.ca), who will verify that your responses have been recorded and screen for fraudulent activity. In analysis, your email will not be linked to your survey responses. The honoraria will be sent from a member of our research team (Rebekah Lee, rebekah_lee@sfu.ca).

By clicking the "Next" button below, I am confirming that I have an SCI, am over the age of 18, and live in Canada. I have read the information about this study, and would like to participate in this survey. If I start the survey and decide I don’t want to finish it I can exit the survey at any time. If I exit without finishing the survey my responses will not be saved.

2% of survey complete.