Student consent_EntourAGE_EN

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School

University of Ottawa *

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Course

4108

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Health Science

Date

Oct 30, 2023

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pdf

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Uploaded by PresidentFlowerShark42

Université d’Ottawa Faculté des sciences de la santé École interdisciplinaire des sciences de la santé University of Ottawa Faculty of Health Sciences Interdisciplinary School of Health Sciences 613-562-5800 ext. 2983 613-562-5632 25 Université/University Ottawa ON K1N 6N5 Canada www.uOttawa.ca INFORMATION LETTER AND CONSENT FORM Study: EntourAGE Dear Madam, Sir, This letter is to inform you of a research project being conducted by researchers from the University of Ottawa . This project has been funded by the Alzheimer Society of Canada through their Alzheimer Society Research Program. What is the purpose of this study? The aim of this research study is to evaluate a person-centred volunteer program where persons living with dementia can engage in one-on-one interactions with high-school, college and university students. This study is part of the EntourAGE program. The program is based on a project called REVIVRE which was pilot tested in Ottawa and St. Catharines. The EntourAGE program will be scaled-up by expanding the program to other locations based on lessons learned from the pilot study and by enhancing the evaluation of the program. Specifically, this research will examine the impact of the program on persons living with dementia (e.g., quality of life), their caregivers (e.g., stress) and high-school, college and university students (e.g., positive attitudes towards older adults). What will my participation involve Participants will be selected on a first come, first served basis, granted they satisfy the volunteer requirement. This may include a preliminary interview, a police record verification, providing proof of immunization, completing a 2 step TB test, complete a course on research ethics, and mandatory training sessions (approximately 6 hours). Each student will have the opportunity to be matched in-person or virtually. Students who choose to volunteer in-person will have a list of participating sites where they can choose to be matched (i.e., long term care homes, retirement homes, adult day care programs and community organizations serving older adults). Each student will be matched with a person living with dementia based on common interests and preferred language. As a student, you will be asked about these interests in a survey when the study begins. You will then visit the person living with dementia twice a week for 2 hours, for a total of 4 to 12 months. This means you should be volunteering for, on maximum, 4 hours per week in 2-hour blocks. Your role as a student volunteer will be to acquaint yourself with the person living with dementia and help them participate in activities of their choice. Assigned students and caregivers can exchange emails/ phone numbers with each other so that they can discuss the volunteering experience. During restrictions (e.g., Covid-19), all interactions will be done virtually (over the phone or video chat). Students will communicate with both the caregiver and person living with dementia. Depending on the needs of the person with dementia, students will have virtual interactions with either the person with dementia only, the caregiver and the person living with dementia together, or the caregiver only. When in-person visits are permitted, students will meet with the person living with dementia only. All the participants can choose to continue virtual interactions only.

After each visit, students will complete a 5-minute online questionnaire to confirm the length of the visit and identify the activities they participated in with the person living with dementia. Students will fill out additional questionnaires on a maximum of 4 occasions (baseline, four months, eight months, and 12 months) depending on how long they remain involved in the study. What are the benefits of my participation? Students will learn a lot about dementia and gain experience working and interacting with person living with dementia. Students will obtain firsthand training from experts and receive training materials (pamphlets, guides, PowerPoint documents, etc.) and support during the course of the program. What are the potential risks of my participation? There are potential risks associated when working with a vulnerable population (for example, person living with dementia), such as the possibility of encountering responsive behaviours (e.g., person appears upset, frustrated and restless). These risks are lessened through training, supervision and guidance from health care professionals and researchers. When volunteering in person, there is also the potential risk of being exposed to infections. However, when an outbreak occurs, all volunteers are informed that they are no longer allowed to enter the unit that is affected. They will also be notified when it is safe to return. Confidentiality and Privacy The data will be analyzed by the researchers throughout the study and will only be accessible to the research team (this includes student researchers who might use a portion of the data for their research project). Data collected on the program will not contain your name and you will be identified by only a code. Only summarized findings will be reported (no individual data) and individual data will only be consulted by the research team. At the beginning of the study, students will be asked to sign up on a platform called ‘InitLive’. InitLive is a volunteer management software that allows easy matching, scheduling, and managing of volunteers. Students will be asked to submit their required documents (e.g., 2-step TB test) on the InitLive platform, providing alternative ways for those who cannot During the study, students will also be invited to participate in a mini-conference called ‘Continued Development S ession’ every month with a panel of health professionals, caregivers of people living with dementia and dementia experts. The goal of the mini-conference is to answer any questions that the volunteers may have regarding the person living with dementia or their experiences, and to provide ongoing training and support from an interdisciplinary group of professionals. Due to the mini-conference being a group activity, your confidentiality is limited in such a setting. While the researchers will respect your confidentiality, it cannot be guaranteed that other members of the group will preserve the confidentiality of the information shared by you during these conferences. Student will be reminded of the importance of confidentiality at the beginning of each mini- conference. Conservation of Data For audit purposes, the only organizations that may require access to the study files under the supervision of the researcher are the Proctor Officer for Ethics in Research at the University of Ottawa. All data collected will be secured in a locked cabinet and stored in a password protected computer database. The data collected will be kept for five years following the end of the study. After this period, all electronic data will be securely deleted, and all paper documentation will be shredded . Will I be compensated for my participation? At the end of the study, students will receive a certificate outlining the number of hours they volunteered.

Is there anything I can do if I found this experiment to be emotionally upsetting? If you feel any distress or anxiety after participating in this study, please feel free to contact: The Distress Centre of Ottawa at 613-238-3311 ( http://www.dcottawa.on.ca ), or the Ottawa Mental Health Crisis Line at 613-722-6914 ( www.crisisline.ca ). Voluntary Participation Participation in this study is voluntary. You are under no obligation to participate and if you choose to participate, you can withdraw from the study at any time and/or refuse to answer any questions, without suffering any negative repercussions to yourself or your education. However, if you choose to withdraw, all data gathered until the time of withdrawal will be kept in the database and used in the study unless a specific request to remove the data is made by the participant. If you have any questions about the study, you can contact the researcher or project coordinator. If you have any questions regarding the ethical conduct of this study, I can contact the Office of Research Ethics and Integrity via email (ethics@uottawa.ca) or telephone (613-562-5387). You can contact the project coordinator or the principal investigator for additional information: Project Coordinator: Muhammad Qureshi Research Coordinator, Faculty of Health Sciences, Interdisciplinary School of Health Sciences University of Ottawa mqureshi@uottawa.ca Principal Investigator: Annie Robitaille Assistant Professor, Faculty of Health Sciences, Interdisciplinary School of Health Sciences University of Ottawa 514-887-1065 arobitai@uottawa.ca Please keep this information letter for your own records. We sincerely thank you for your interest in this study. CONSENT Acceptance: By signing my name below, I agree to participate in this research study . Participant's name: _______________________ Participant's signature: _______________________ Date: __________________ Researcher's signature: _______________________ Date: __________________

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