LETTER OF INFORMATION – Caremongering Members
Study Title: Using social media-driven solutions to support family caregivers
Principal Investigator: Dr. Hsien Seow, PhD, Associate Professor
Department of Oncology, McMaster University
Funding Source: Labarge Centre for Mobility in Aging COVID-19 Grant
As part of this study we are inviting Caremongering site administrators to participate in an interview and site users to complete a survey, to share their experiences about how Caremongering groups and other social media movements could be used to support communities. This study has been approved by the Hamilton Integrated Research Ethics Board (#11129)
Thank you for taking the time to read this information sheet.
What is the study about?
COVID-19 has drastically increased the burden, stress, and social isolation on family caregivers and older adults. The objective of this study is to research how to leverage social media-driven solutions to better manage COVID-19’s consequences on caregivers, as well as how to spread and sustain these solutions to more broadly impact society. Specifically, our aim is to: 1) Develop an understanding of how caremongering social media sites operate and the propensity for caregivers/older adults to use these resources; 2) Crowdsource social media-driven solutions that provide support to caregivers/older adults; 3) Prioritize the best ideas and adapt these solutions for spread.
Why am I being invited?
As a potential user of Caremongering sites or similar online networks we wish to survey you to learn about your relevant experiences and your opinions about how Caremongering groups and other social media movements could be used to support caregivers and older adults in the community.
What happens if I decide to participate? What questions will I be asked?
We are asking you to respond to an online survey. This survey takes about 5 minutes to complete. On the survey you will be asked to share your “caremongering” story. At the end of the survey there is an option to provide your email address if you would like to participate further in the study in providing input into the development of social media solutions to assisting caregivers and older adults in the community.
How many individuals are participating in the interview/survey?
We are expecting 10 to 20 Caremongering site administers to participate in an interview and 100+ Caremongering members to complete the study survey (share their story).
How will you preserve confidentiality?
Your identity, as well as all information gathered, will be treated with the utmost confidentiality. You are participating in this study confidentially. We will not use your name or any information that would allow you to be identified.
What if I change my mind about being in the study?
Participation in the survey is voluntary. You are free to refuse to answer any question or to withdraw at any time. Information you provided up to the point where you withdraw will be kept unless you request that it be removed. If you wish to withdraw from the study at any point, contact us here.
What are the benefits of participating? Are there any risks?
Your experiences and opinions are very important to us and to this study. By participating in a survey, you will have an opportunity to share your insights that will help us and others understand the potential for social media solutions to assist caregivers and older adults in the community. There are no real risks associated with your participation, other than the possibility that you may be uncomfortable sharing some of your experiences.
How will you keep my information private?
We will undertake to safeguard the confidentiality of your responses. No individual responses will be identifiable in any results we share with those outside the research team. All personal information such as your name, age, and email address will be removed from the data and will be replaced with a number. The data, with identifying information removed will be securely stored in a locked office in the research office at the Juravinski Cancer Centre.
For the purposes of ensuring the proper monitoring of the research study, it is possible that a member of the Hamilton Integrated Research Ethics Board and this institution and affiliated sites may consult your research data for quality assurance purposes. However, no records that identify you by name or initials will be allowed to leave the research office.
Will I be paid to participate?
Study participants will not receive compensation for completing the survey.
If I would like to participate, what do I do next?
If you are interested in participating in the study, please click on the link provided and complete the online survey at your earliest convenience.
Questions about the Study
Please don’t hesitate to contact us here.
This study has been reviewed by the Hamilton Integrated Research Ethics Board (HIREB). The HIREB is responsible for ensuring that participants are informed of the risks associated with the research, and that participants are free to decide if participation is right for them. If you have any questions about your rights as a research participant, please call the Office of the Chair, Hamilton Integrated Research Ethics Board at 905.521.2100 x 42013.