General Survey Information
What is the SCI Community 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.
Why is the survey being done?
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.
Who is conducting the survey?
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.
How will the survey results be used?
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.
How many people are expected to take part in the survey?
In order to create Canada's largest repository of SCI data, approximately 3,000 people with SCI in Canada will need to complete the survey.
Participant Information
Who is eligible to participate in the survey?
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.
How do I take the survey?
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.
If I participate, what topics will I be asked to provide information on?
The survey covers a wide range of topics, some of which include:
- Accessible housing
- Attendant care
- Income support
- Equipment, medical supplies and technical aids
- Secondary complications that you may have experienced (e.g. pressure ulcers, pain, bowel and bladder problems)
- Your participation in work-related activities
- Communication devices
- SCI-specialized health care
- Emotional counselling
- SCI peer support
- Transportation
- Healthy living programs
- Job training
How long does the survey take to complete?
Due to the comprehensive nature of the survey, it will take most people about 60 to 90 minutes to complete.
Will I be compensated for my time?
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.
How long will the survey run for?
The survey launched in May 2011, and is expected to run for the next 6-8 months.
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