Study Details
Project title: Understanding Dementia Caregiver's Needs and Expectations from a Social Robotic System for Training and Support
Principal Investigators: Prof. Moojan Ghafurian
Student Investigator: Farida Olumo
You are invited to participate in our study examining how a social robot can be used as a training tool to help caregivers understand the emotional behaviors of dementia residents. As part of this system, a supporting mobile app is being developed to work with the robot’s training features. This study requires insights from caregivers regarding their needs and expectations from a social robotic training system. Before you agree to take part in this study, it is important for you to understand what you will be asked to do. Please read the information below and make a decision about whether you wish to participate. Feel free to ask any questions about the study, or any part of this form that may not be clear.
Research Purpose
This research is aimed at understanding dementia caregivers’ experiences, challenges, and needs to help guide the development of a social robot training system. The system is envisioned to do role playing scenarios based on the emotional and past identities of dementia residents.
Procedure
This study involves a focus group session, where dementia caregivers would discuss and answer a series of questions about their lived experiences and challenges in taking care of dementia residents in care centers, as well as potential gaps in support that can be filled with technologies. The focus group session will take place in person at a location to be determined after discussions with the center’s and is expected to take not more than 90 minutes. The time spent participating in the focus group session will be remunerated (meaning you will receive remuneration for your time). Please note that all information collected will be anonymized, stored securely in our repository, and disposed of as soon as it is no longer needed. Your participation in this study is highly valuable as it can help shape design of a social robotic tool with the goal of supporting current and future dementia caregivers.
Participation and Withdrawal
The session will begin with a brief discussion about your caregiving experiences and training needs. You will then see a short presentation and demonstration of a caregiving app, followed by a discussion about your impressions. After this, you will watch a short presentation about social robots and take part in a discussion about using them as a training tool. At the end of the session, you will be asked to complete a printed questionnaire that includes some demographic questions (for example, age, gender, etc.), caregiving background and technology familiarity.
The sessions will be recorded for analysis. Audio and video recordings will be stored on encrypted, password protected devices and secure university servers. After the recordings have been transcribed, de-identified, and any blurred or altered versions have been created according to your recording preferences, the original recordings will be deleted. You will also have the opportunity to participate in future phase should you indicate interest.
If you choose to withdraw from the study, we can remove or blur any identifiable audio or video of you. However, we cannot remove the content of your contributions to the group discussion, as this information becomes part of a shared conversation and cannot be separated from other participants’ responses. We also cannot remove questionnaire responses because they are collected anonymously and cannot be linked back to you. If you have any questions, please feel free to ask the researchers from the contact Information below.
Foreseeable Risks and Potential Benefits
The study is considered very low-risk. Any emotional discomfort that may arise would be similar to what caregivers might experience when thinking about challenging or meaningful past interactions in their day-to-day work. While direct personal benefits cannot be guaranteed, participants may gain insight on what they need and expect from a social robotic training system designed to support caregivers in responding to dementia-related emotional and behavioral expressions. In addition, the study will contribute to the development of realistic training scenarios that can be used both by researchers in future studies and by practitioners such as healthcare professionals, social workers, or trainers seeking to enhance caregiver training.
Contact for Future Phase
With your permission, we may contact you regarding a future phase that may be conducted as a separate part of this study. Agreeing to be contacted does not obligate you to participate in the future phase, and you may withdraw your consent to be contacted at any time.
Will I receive anything for participating in the study?
You will receive a total of $30 CAD for completing the full study session, which lasts approximately 90 minutes. If you choose to withdraw before completing the session, you will receive pro-rated remuneration based on the amount of time you took part in the study, even if you stop early (for example, participating in half the session would result in receiving half of the total payment). This ensures that you are remunerated fairly for your time.
Contact Information
If you have any questions or concerns, please feel free to contact: fjolumo@uwaterloo.ca.
This study has been reviewed and received ethics clearance through a University of Waterloo Research Ethics Board (REB #48027). If you have questions for the Board, contact the Office of Research Ethics, toll-free at 1-833-643-2379 (Canada and USA), 1-519-888-4440, or reb@uwaterloo.ca.