An update about the Survey on the needs of Canadians with a spinal cord injury
A big thank you to over 1,550 individuals who participated in this important Survey. The Survey is now closed and the research team is currently conducting a review of the data. In autumn/winter we will release an overview of the results from the entire survey.
This study is supported by many partners like the Rick Hansen Institute and SCI Canada (formerly the Canadian Paraplegic Association). These organizations will be provided with the overall study results (not your individual answers) to enable them to influence policy makers and advocate for improvements in services for people with SCI within Canada and your home province.
This survey would not have been possible without the participation of the hundreds of individuals who took the time to participate and voice their opinions.
Best regards,
The Survey Team
Be Part of the Largest Survey ever
on Canada's SCI Community
Welcome to the Spinal Cord Injury (SCI) Community Survey website. Here you will find information on the survey itself, the many partners behind the project and detailed answers to some common questions.
Watch a video from the survey's lead researcher, Dr. Luc Noreau.
The survey is an ambitious project; in fact, it is the largest of its type ever done in Canada among people with SCI.
To date, over 1,400 individuals have participated in the SCI Community Survey, but we hope to collect the input from more than 3,000 Canadians with SCI in an effort to better understand whether your most critical needs are being met by existing health and social service programs.
What's different about this survey? We know that people with SCI are frequently asked to participate in research studies and that much is already known about your needs. So why should you participate? The answer is simple - the SCI Community Survey is the first study to examine whether or not those identified needs are actually being met by Canada's health care and social services systems.
The information will help community organizations advocate on your behalf for better regional services as the survey will provide a Canada-wide snapshot of the perception on the services are available in each community.
Who is behind the survey? The SCI Community Survey was created with input from people with SCI, experts in the field of SCI research and health care, as well as SCI community advocates. It is supported by the Rick Hansen Institute, led by a team of Canadian researchers headed by Dr. Luc Noreau at the Université Laval, endorsed by the Canadian Paraplegic Association, MÉMO-Québec and other community groups, and will be conducted by the Mustel Group, a professional market research firm.
What can I do to help? Take the survey. But don't stop there. Help spread the word and encourage anyone with SCI in Canada over the age of 18 to take the survey as well.
Thank you for your interest and we hope that you will choose to voice your opinion and participate in this important survey.
The SCI Community Survey is the largest study of its kind to ever be done in Canada among people with SCI. Once completed, it will become the largest repository of SCI data related to people living in the community. By participating in the SCI Community Survey, people with SCI have a unique opportunity to further describe their most critical needs and help guide how the Canadian health and social services system could better meet those needs.
The survey was created with input from people with SCI, experts in the field of SCI research and delivery of SCI-specific health care, as well as SCI community advocates.
The survey is being done for several reasons. Its primary intent is to confirm the most important SCI-specific needs of Canadians with SCI. It is also intended to determine how successfully the Canadian health and social services system is meeting those needs across the country. And, ultimately, it will create a clear picture of where in Canada's support systems there is opportunity to improve so as to truly minimize disability and maximize the quality of life of Canadians with SCI.
This survey is being conducted by a professional research firm under the supervision of a team of Canadian researchers led by Dr. Luc Noreau of Université Laval. The survey has been reviewed by an ethics committee, and is funded by the Rick Hansen Institute.
How will the survey make a difference for Canadians with SCI?
Once completed, the results will provide SCI advocates, service providers and government, with the evidence they need to address some of the most pressing issues for people with SCI. Right now, whether or not the self-identified and most critical needs of people with SCI are being met by existing health and social service programs is unknown.
Once the survey is completed, the results will be shared with the Canadian Paraplegic Association, service providers, government, and other interested parties. The information gathered can help the advocates of the SCI community target the most pressing issues of disability-related needs and services and equip them with the evidence necessary to work toward system improvements.
The survey researchers are also expected to publish a body of work that has significant potential to improve the quality of life of Canadians with SCI and benefit organizations that support Canadians with SCI.
Will the results of the survey be made publicly available?
Yes. The results will be made publicly available through partner organizations (e.g. Rick Hansen Institute, Canadian Paraplegic Association) and by the researchers themselves.
All Canadians who have a spinal cord injury caused by a trauma or a disease, have been living in a community setting for at least one year after discharge from hospital or rehabilitation facility, and are at least 18 years of age can participate.
There are two easy ways to take the survey. We highly recommend taking the survey online. The online survey offers you the option of completing the survey in stages, allowing you to save what you have completed and then return to it at a later time when it is convenient for you.
If you are unable to complete the survey online, there is the option to take the survey over the telephone. To complete the survey by telephone please call 1-877-594-6333.
As a person with SCI, why should I participate in the survey?
You, more than anyone, can provide valuable insight into how well the Canadian health care and social services systems are meeting your needs. This is your chance to have your needs known and to voice your opinion! When your responses are pooled with those of your peers across Canada, a clear picture will emerge of what the priority needs of Canadians with SCI as a group are, what services for Canadians with SCI are working, and what services are lacking.
We know that Canadians living with spinal cord injury (SCI) have participated in many surveys already and much is understood about their needs, but what makes the SCI Community Survey unique is that it will examine whether or not these needs are being met by existing health and social service programs.
Yes. All survey participants will receive a $25 gift card, a complimentary subscription to Solutions, the Rick Hansen Institute's quarterly magazine, and a complimentary subscription to the Canadian Paraplegic Association's magazine.
If I participate, will my personal information be kept confidential?
Absolutely. Protecting your privacy is of primary importance to the Rick Hansen Institute and to the survey team. Any reports or publications resulting from this research study will use data that does not identify you specifically. Any information that may directly or indirectly identify you will be removed from the data. You will only be identified in this study by a unique Study ID Number instead of your name. All your records will be identified with this unique Study ID Number, both locally and nationally, to protect the confidentiality of your personal health information and to respect your privacy. All of the people who will have access to the study data have a professional responsibility to protect your privacy and have signed confidentiality agreements.
In addition to the above, the SCI Community Survey has been reviewed and approved by a university ethics board.
