Stroke Survivor Survey
Please ensure that you read and understand the following information.
This study is being conducted by a team of researchers from the University of Technology Sydney. The goal of the study is to determine the nature of care pathways for stroke survivors with visual impairment in NSW. It aims to find out how vision is tested post-stroke and when the testing happened. We will also examine how you were referred for therapy and what kind of vision management/ rehabilitation you have had. From the information you give us, coupled with the perspectives of stroke health professionals, we aim to identify gaps in the eye care pathway and potential barriers to successful management and rehabilitation for visual conditions.
You are invited to participate in this study because you are a stroke survivor or carer of a stroke survivor who live in NSW. You have expressed to a healthcare professional, interest in participating in this survey OR you have sought out this survey via an advertisement. Please note that there is no financial remuneration provided to participants.
If you decide to participate, you will be asked to complete a series of questions about your experiences and perspectives on the vision care you received following your stroke. The questions are aimed at gathering information about the following:
• The timing and nature of your stroke
• The impact of your stroke on your eyes and vision
• Your experience of any vision tests and treatment you might have received as an inpatient
• The long term vision care plan provided to you and your perspective on how this affected your overall rehabilitation
• Whether you feel you had any unmet care needs and if you had any barriers to receiving eye care.
The survey takes approximately 30 minutes to complete. If completing the survey online, you may save your responses at any point and resume the survey at a later time. Completing the survey does not obligate you to further participate in any additional aspects of the study.
ARE THERE ANY INCONVENIENCE OR RISKS?
Yes, the time given (30 minutes) to complete the survey may be an inconvenience. You might also feel some uncomfortable emotions when recalling experiences of your stroke and the recovery process. If so, you can stop the survey at any time without giving a reason.
You don't have to say yes. Participation in this study is voluntary. It is completely up to you whether or not you decide to take part. Your decision to participate, or not participate, will not affect your relationship with the researchers, UTS or your health care professionals.
WHAT WILL HAPPEN IF I SAY NO?
Nothing, I will thank you for your time and won't contact you about this research again. If you decide not to participate in the survey, we will not collect additional personal information from you and destroy existing personal information and contact details. If you wish to withdraw from the study once it has started, you can do so at any time without having to give a reason, by contacting Dr Amanda French - E: Amanda.French@uts.edu.au PH: (02) 9514 7238 or Shanelle Sorbello - E: Shanelle.Sorbello@student.uts.edu.au PH: (02) 9514 4106.
By submitting this survey you consent to the research team collecting and using the information provided in this survey for this research project. All this information will be treated confidentially. Your data will be de-identified and securely stored on a UTS internal server, which is accessible only via an authenticated UTS system login and only available to the researchers involved in the study. Your information will only be used for the purpose of this research project. It can only be disclosed with your permission, except as required by law. We plan to publish the results of the study in scientific journals and present results at relevant scientific conferences. In any publication, information will be provided in such a way that you cannot be identified.
WHAT IF I HAVE CONCERNS OR A COMPLAINT?
If you have concerns about the research that you think I can help you with, please feel free to contact Dr Amanda French - E: Amanda.French@uts.edu.au PH: (02) 9514 7238 or Shanelle Sorbello - E: Shanelle.Sorbello@student.uts.edu.au PH: (02) 9514 4106.
This study has been approved by the University of Technology Sydney Human Research Ethics Committee. If you have any concerns or complaints about any aspect of the conduct of this research, please contact the Ethics Secretariat on ph.: +61 2 9514 2478 or email: [Research.Ethics@uts.edu.au], and quote the UTS HREC reference number [ETH18-2675]. Any matter raised will be treated confidentially, investigated and you will be informed of the outcome.
By completing and submitting this survey you are indicating your consent to participate.
Please complete the survey below.