Invitation to Participate in Survey and Focus Group

Hello,

Thank-you for attending this performance of the Dialysis Project, a theatre performance about the lived experience of dialysis in Newfoundland and Labrador. You are being invited to take part in a research study in relation to this performance. The study, entitled the Dialysis Project, is designed to explore the experiences of audience members, and gain your feedback regarding the impact of the performance on your learning and feelings regarding dialysis and people who experience dialysis within Newfoundland and Labrador. The researchers are also interested in your feedback on ways the performance might be useful in health education and building knowledge about dialysis. You are invited to participate in two parts of the study: 1) a post-performance survey and 2) a focus group.

1) Survey:

Audience members from all 3 virtual performances of The Dialysis Project are being invited to participate in an online post-performance survey. This survey will take no more than 10—15 minutes to complete. While you may not benefit directly from this study, the feedback you provide may contribute to improving education related to dialysis and improving the lives of people living with End Stage Renal Disease on dialysis, as well as others living with chronic illness. There are no foreseeable risks involved in participating in this survey. The survey is completely anonymous, and your name will not be connected to the information you provide. It is your choice to take part in this study, participation is completely voluntary. Should you choose to complete the survey, you can leave blank any questions you feel uncomfortable answering. You may choose to stop filling out the survey at any time. However, once survey responses are completed, they may not be removed.

You have the right to receive all information that could help you make a decision about participating in this study, in a timely manner. You also have the right to ask questions about this study at any time and to have them answered to your satisfaction. Your rights to privacy are legally protected by federal and provincial laws that require safeguards to ensure that your privacy is respected. By completing this survey, you give us your consent to be in this study. It tells us that you understand the information about the research study. When you complete this survey, you do not give up any of your legal rights, nor does completion of the survey relieve the research team of their legal and professional responsibilities. The data collected from the surveys will only be viewed by the research team and will be securely stored at Memorial University for five years in encrypted files, at which point they will be destroyed. The survey responses will be collected using Qualtrics, an online survey platform supported by Memorial University. Despite protections being in place, there is a risk of unintentional release of information. Researchers will make every attempt to protect your privacy.

The post-performance survey link is below. By clicking this link you are consenting to the collection of your survey responses as outlined above:

Click here to access the survey.

If you have any questions regarding your rights as a research participant please contact the Health Research Ethics Authority at (709) 777-6974 or info@hrea.ca

2) Focus Group:

We also would like to invite you to participate in a focus group (about 60 minutes) to discuss your experiences as an audience member. If you are interested in participating in a focus group, please provide your email address or other contact information here. This information will only be seen by the researchers and will not be connected to your survey information should you choose to complete the survey. Should you choose to participate, you will receive an email from the researchers with more information regarding the focus group and the consent process involved. Participation is completely voluntary.

Sharing of Results: The anonymous research results may be shared at local, national, and international conferences, and may be published in a peer-reviewed journal. The results will also be used to prepare an e-learning resource that will be distributed to teachers, healthcare professionals, and other key groups.

Thank you for your consideration. If you have any questions or concerns, please contact:

Dr. Leah Lewis leah.lewis@mun.ca
Dr. Pam Ward pamela.ward@mun.ca