Providing Support in SCI

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Priorities for Intervention Research Aiming to Enhance the Lives of Family, Friends and Partners Who Support People with a Spinal Cord Injury: Understanding the Perspectives of Those Who Provide and Those Who Receive Support
 
Consent Form 
 
Principal Investigator:
Dr. Heather Gainforth

School of Health and Exercise Sciences, University of British Columbia Okanagan
Phone: (250) 807–9352; Email: heather.gainforth@ubc.ca
 
Co-Investigator:
Rhyann McKay

School of Health and Exercise Sciences, University of British Columbia Okanagan
Email: rhyann.mckay@ubc.ca
 
Partners: 
Spinal Cord Injury Alberta, Spinal Cord Injury British Columbia and Spinal Cord Injury Ontario
 
Purpose: 
The purpose of this study is to develop research priorities for developing interventions aiming to support family, friends and partners who assist people with an SCI with activities of daily living and provide emotional support. To prioritize research efforts, this study aims to identify the areas of research that are most important to people that support people with an SCI including the outcomes of providing support that are most important to address, factors that may influence these outcomes and intervention methods that may be helpful for those who support people an SCI. You are invited to take part in this research study because you are a family member, friend or partner that supports with an SCI or you are someone with an SCI that receives support from a family member, friend or partner.
 
Study Procedures: 
Your participation in this study will first include completing a survey asking for demographic information as well as the best time to contact you. This survey will take approximately ten minutes to complete. You will then be asked for your contact information and consent to be contacted by a member of the research team.
 
A member of the research team will then contact you to schedule a convenient time for you to be interviewed. Before the interview begins, you will be asked to provide verbal consent to have the interview recorded. The interview will be audio-recorded by researchers either over the phone/internet or in person and will take approximately 60 to 90 minutes to complete. 
 
Potential Risks: 
There are no known physical, psychological, economic, or social risks associated with this study. You should not feel obliged to answer any material or participate in anything that you find objectionable or that makes you feel uncomfortable. You may also withdraw from the study at any time by contacting Dr. Gainforth by phone or by email.
 
Potential Benefits: 
Your participation in this study will help to prioritize intervention research efforts aiming to enhance the lives of family, friends and partners who support people with an SCI. By participating in this research, participants can contribute to prioritizing research and guiding resources to areas that are most relevant to those who support people with an SCI and may be more likely to bring about positive outcomes for this population.
 
Confidentiality:
This online questionnaire is administered by the UBC-hosted version of FluidSurveys. All data will be stored and backed up in Canada. Data will be kept for at least five years after publication.  All transcriptions and surveys from this study will be anonymized and kept in a locked filing cabinet in Dr. Gainforth’s Lab at UBC Okanagan. Electronic recordings, survey, and transcription data will be stored on password-protected computers in a locked office in Dr. Gainforth’s Lab at UBC Okanagan. As this research is for thesis purposes, study documents will be published on cIRcle, and as such will publicly available on the internet. Research findings may also be published in professional journals or presented at scientific conferences, but any such presentations will be of general findings only and will never breach your confidentiality. Data will be stored for a minimum of 5 years following publication.
 
Remuneration/Compensation:
You will receive a $20 gift card to a retailer of your choice (i.e., Starbucks, Tim Hortons, Cineplex, Bath and Body Works, Best Buy) for participating in this study. You will be able to indicate how you would like to receive your gift card (i.e., by mail or by email) in an online contact survey that will be filled out before the interview. You will receive your gift card approximately three weeks following your participation in this study.
 
Contact for information about the study:
If you have any inquiries or would like further information about this study, you may contact Dr. Heather Gainforth at (250) 807–9352. You can also email our team at heather.gainforth@ubc.ca or abc.lab@ubc.ca.
 
Contact for concerns about the rights of research participants:
If you have any concerns or complaints about your rights as a research participant and/or your experiences while participating in this study, contact the Research Participant Complaint Line in the UBC Office of Research Services at 1-877-822-8598 or the UBC Okanagan Research Services Office at 250-807-8832. It is also possible to contact the Research Participant Complaint Line by email (RSIL@ors.ubc.ca). Please reference the study number H17-02308 when calling so the Complaint Line staff can better assist you.
 
Consent:
Your participation in this study is entirely voluntary and you may refuse to participate or withdraw from the study at any time.  If you prefer, you can email or call Dr. Heather Gainforth to withdraw and have your data and recordings deleted from the study.
 
If you would like to participate, please click on the “next page” button to begin. This will indicate that you have read and understood the above information and have consented to participate in this study. If you do not wish to participate, please exit this website.
 
*Please print or save a copy of this form for your records*