Title of Study: Implementing & Scaling Up the Long-Term Care Palliative Toolkit During COVID
Principal Investigators: Sharon Kaasalainen (McMaster University, School of Nursing)
Funded by: Canadian Institutes of Health Research, Canadian Centre for Aging & Brain Heath Innovation Development Inc and the New Brunswick Health Research Foundation
You are being invited to participate in a study focused on implementing and scaling-up a palliative toolkit in long-term care homes during COVID. To decide whether or not you want to be a part of this research study, you should understand what is involved and the potential risks and benefits. This form gives detailed information about the research study, which will be discussed with you. Once you understand the study, you will be asked to sign this form if you wish to participate. Please take your time to make your decision.
WHAT IS THE PURPOSE OF THIS STUDY?
This project aims to (1) conduct a scale-up assessment of the new long term care palliative toolkit in three provinces (ON, SK, NB) including ways to adapt it for diverse regions and contexts and document lessons learned from implementation in diverse settings. We will then evaluate the implementation and effectiveness of the toolkit in participating LTC homes during COVID-19. This project will occur in three long-term care homes; one each in New Brunswick, Ontario and Saskatchewan. As part of this study, we are interested in gaining your opinion of the palliative toolkit.
WHY HAVE I BEEN CHOSEN?
You have been identified as a long-term care staff member who is 16 years or older, can understand written and verbal English, do not have severe cognitive impairment or gross psychopathology, and are the individual involved in the care of a long-term care resident.
WHAT WILL MY RESPONSIBILITIES BE IF I TAKE PART IN THE STUDY?
If you volunteer to participate in this study, you will be invited to participate in a15-30 minute pre- and post-intervention survey on palliative care knowledge.
WHAT ARE THE POSSIBLE BENEFITS?
There are some benefits to participating in the study. You may learn more about the palliative and end of life care options available for long-term care residents. You may feel supported and able to share your thoughts, opinions, and experiences of being a staff member. You will also receive a $25 gift card in appreciation for your participation.
WHAT ARE THE POSSIBLE RISKS AND DISCOMFORTS?
We recognize the possibility that the nature of the tools and the conversations they elicit may be difficult for you. All researchers affiliated with this project are trained health professionals who will be sensitive to your reactions. While we do not expect you to receive any direct benefits from participating in this research, we hope that the information you share will help us to make future improvements to palliative care in long-term care.
CAN I REFUSE TO PARTICIPATE OR END PARTICIPATION EARLY?
Participation in this study is completely voluntary. Declining participation or withdrawing participation will have no impact on your or your employment at this long-term care home. You may also choose to skip any survey or interview questions you do not feel comfortable answering or withdraw from this study at any time by telling the researchers that you are no longer interested in participating in the research.
WHAT INFORMATION WILL BE KEPT PRIVATE?
Your data will not be shared with anyone except with your consent or as required by law. Shortly after you provide your consent to participate in the study, all future records of your involvement will be paired with a non-identifiable study identification number that the data analyst of the study creates. Your identity will be protected and all information that is recorded, transcribed, and analyzed will be kept in a locked cabinet or stored in password protected, encrypted files. All of the information you share in the interview and questionnaires is confidential. Only members of the research team and a transcriptionist will have access to the digitally recorded interview and resulting text document, and the data from the questionnaires that you complete. The digital copy of the interview will be erased when the study concludes.
If the results of the study are published, your name will not be used and no information that discloses your identity will be released or published without your specific consent to the disclosure. We may use direct quotes in publications, but all personal identifiers will be removed. All information that is gathered in this study will be kept confidential. You will not be identified in any published results of the study. All information that you give will be kept in a locked cabinet at McMaster University for up to ten years, after which it will be destroyed. Only members of the research team will have access to the information.
If you agree to participate and have your responses to the brief pre-post survey anonymously submitted to the research team, submit the registration form below to continue. Submitting the registration form will be considered consent to participate in the study.
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 or welfare as a research participant, in this study please call the Office of the Chair, Hamilton Integrated Research Ethics Board at 905.521.2100 x 42013.
Should you have any questions about this study, please feel free to contact Dr. Sharon Kaasalainen (McMaster University) at (905)525-9140 extension 22291.