Please note that we are currently in an evaluation phase. Only users that have been invited to participate in the evaluation are able to sign up at this time.
Consent To Participate In A Research Study
Considerations for Self-Management Support to Reduce Secondary Complications for Individuals with Traumatic Spinal Cord Injury
Susan Jaglal, Ph.D., Department of Physical Therapy, University of Toronto
Research Funding Provided By:
The Rick Hansen Institute
We are designing and evaluating an information and health-coaching resource (called SCI & U) for Canadians with Spinal Cord Inury. The purpose of this resource is to support healthy and independent living among people with Spinal Cord Injury. Be registering for this website, you are indicating that you have an interest in participating in the evaluation of this resource.
Background and Purpose of Research:
We will ask registered users to complete a survey and an interview. Questions will ask you to provide your opinion of both existing and proposed website features as well as content. Results will inform development.
We are recruiting participants who are students of Rehabilitation Sciences at the University of Toronto as well as other Canadians with Spinal Cord Injuries. To participate you must be more than 18 years of age and English-speaking. Before you will be allowed to complete an evaluation, you will be asked to have spent at least 30 minutes with the website and to have customized your user profile in any way you see fit.
You will be asked to fill out an online survey that asks several questions about your experience of SCI & U. Completing this survey will take about 30 minutes of your time. At the close of this survey we will additionally ask if you would be willing to participate in a follow-up phone or Skype interview. Some of the users that agree will be contacted to clarify survey responses and discuss ideas for future extensions of SCI & U. Follow up interviews will last approximately 45 minutes.
All information obtained during the study will be held in strict confidence and will be stored securely. Your full name or any identifying information will never be used in any publication or presentations.
You can choose not to participate or you may withdraw at any time without risk of penalty.
There are no known risks associated with participation in the the research that is described here.
For completing an online survey, you will receive a $5 gift certificate to Starbucks.
If you participate in a follow up interview by phone or Skype, you will receive an additional $25 gift certificate to either Starbucks, Tim Horton's or Amazon.ca (according to your preference).
Information gathered from surveys and interviews will provide a better understanding of the potential for SCI & U to support effective self-management and how it may be improved to better meet the needs of the SCI community.
Privacy & Confidentiality:
All information obtained during the study will be held in strict confidence and stored securely. No names or identifying information will be used in any publication or presentations. All data collected will be permanently deleted five years after the study is completed.
Rights of Participants:
By agreeing to the information presented here you do not give up any of your legal rights against the investigators, sponsor or involved institutions for compensation, nor does this form relieve the investigators, sponsor or involved institutions of their legal and professional responsibilities.
If you have any future questions about the study, please contact SCIandUstudy@utoronto.ca.
How To Use SCI & U
Welcome to SCI and U
SCI and U is an initiative funded by the Rick Hansen Institute to digitally provide the very best in self-management resources to Canadians with Spinal Cord Injuries.
Managing the effects of a Spinal Cord Injury is a life long process requiring knowledge, skill, motivation and perseverance. Yet we know management at home can often be challenging, particularly when you're not close to people with knowledge or experience of SCI.
At SCI and U we are dedicated to enabling better self-management of SCI at home. We do this by using the internet to bring information and people together.
Here you will find:
Basic information on the management of topics like bowel and bladder health in the form of short videos from trusted sources like SCI-U …
… as well as from the latest guidelines for the best in SCI care.
You will also find countless personal stories of management challenges and successes from other Canadians with SCI, organized by topics like exercise management or sexuality.
More importantly, however, you will find opportunities to interact with members of the Canadian SCI Community who share your management interests and concerns.
These members include our managing editors and contributors, who are made up of people with SCI as well as research experts from all over Canada.
You can interact with SCI & U members during online events (or group chats) on topics like Skin Management, Exercise or the Design of Online Health Coaching; these take place every other week. Check our calendar events to find the event that most interests you, and take a peek at our archives to see video of past events. To participate an event yourself, all you need is an internet connection and a browser. We’ll help you to take care of the rest.
You can also read what members are saying on the SCI + U blog, which is updated every other day with stories about life with an SCI that come from all over Canada.
If you are motivated, you can contribute your own story as well, so we can make it available to others who can learn from it.
And in the Winter of 2017, SCI+U will proudly begin offering an online health coaching service that can partner you with a trained peer for 1-on-1 health management counselling and support. Our trained peers are experts in helping people to shape their health management goals and to take steps toward making their goals a reality. Designs for this service are ongoing and opportunities to get involved in will be provided throughout the spring and early summer of 2017.
In the meantime, we hope you find SCI&U engaging, entertaining, educational and empowering. We hope it brings you closer to people and information that you trust, and that can ease the burden of the challenges you face with self-management at home. And we hope you will become a member of our community, and to work with us to continue to build and improve SCI & U over time.
On behalf of all of us at the SCI & U team, welcome; we are delighted to have you in our community.