The purpose of this study is to examine caregivers’ living in Nova Scotia and Prince Edward Island experiences of burden and burnout. We will be looking to study the health and wellbeing of caregivers, and whether physical activity and exercise might lessen the expression of caregiver burden and burnout.
You are being asked to participate because you are a caregiver of an older adult who is living in the community. It is your choice whether you wish to participate or not. If you do decide to take part, you can still change your mind and stop participating at any time.
This study will be conducted using a two-phased approach. As a participant in Phase 1, you will be asked to complete a survey containing items that measure health, exercise and physical activity history, and caregiver burden and burnout. Completing this survey should take no more than 45 minutes of your time. The survey can be completed online or on paper. Completed paper copies will be sealed in the envelope provided and returned to the investigator directly or by return mail. Online responses will be sent to the researcher at Acadia University. We plan to survey 300 caregivers in Nova Scotia and PEI. You will also be provided the opportunity to participate in Phase 2 of the research (an in depth interview) by providing your contact information at the end of the survey. This information will be kept separate from the survey data. Each completed survey will be given a PIN. The list of PINs and matching contact information will be kept separate from the data and will only be used to contact you for Phase 2. Participation is completely voluntary and you may withdraw from the study at any point in time by choosing not to complete the survey. In addition, you may leave any questions unanswered.
There are no known risks or side/effects associated with completing this survey. While you will not directly benefit from participation in this research, the information obtained from this study may assist in understanding the burden and burnout caregivers may experience and whether or not exercise and physical activity might it. This will serve to inform efforts at addressing caregiver health and wellbeing, assisting them to better cope with the stresses of caregiving. It is possible that the issues raised in the survey may lead to distress as you consider your levels of stress and burnout. If you would like to talk to someone about these issues, you may contact the Mental Health Crisis Line in Nova Scotia (1-888-429-8167) or The Island Help Line in PEI (1-800-218-2885).
Participants who complete the survey will have the opportunity to be entered into a draw to win one of four $50 gift certificates to Superstore or Sobeys. Although you will be asked for your e-mail address or phone number in order to notify you if you are awarded the gift certificate, this information will not be connected to your survey responses. All e-mail addresses and phone numbers will be kept separate from the survey data and will be deleted following the completion of data collection. If you choose not to participate, you will not be eligible for entry into the prize draw.
Participation in the study will not cost you anything.
We will do everything possible to keep your personal information confidential. Your name will not appear in any report, publication or presentation resulting from this study or on any final documentation (whether the report is published or unpublished), and the use of pseudonyms to identify the quotes obtained from individual participants will protect your identity. If the results of this study are presented at a meeting, or published, nobody will be able to tell that you were in the study. Each completed survey will be given a PIN. The list of PINs and matching contact information (for those who are interested in participating in Phase 2) will be kept separate from the data and will only be used to contact you for Phase 2. Note that your responses will be kept confidential and that no individual data will be shared; only the researcher will have access to the individual data. The data will be collected and securely stored in a locked filing cabinet. Electronic versions will be stored securely on a password-protected computer. All data will be kept for 7 years.
You are free to withdraw from the research study at any time without penalty. If at any point you are interested in withdrawing from the study, close the online survey window or do not return the paper copy of the survey. Online data collected up until that point may be used in analysis. We will be unable to remove your data after the survey is complete and returned to the researcher because your data will be unidentifiable due to the anonymous nature of the survey.
The researcher is not aware of any actual, perceived, or potential conflicts of interest
If you have any questions, please do not hesitate to contact the researcher, Janna Wentzell, at janna.wentzell@royalroads.ca. This project has been reviewed and approved by the Research Ethics Boards at Acadia University and Royal Roads University. In the event you have any questions or concerns resulting from your participation in this study, you may contact Dr. Stephen Maitzen (Chair of the Acadia Ethics Board), stephen.maitzen@acadiau.ca or the Chair of the Research Ethics Board at Royal Roads University, ethicalreview@royalroads.ca; 1-250-391-2600 ext. 4206.
