Research Study: Sibling Caregiver Consent Form

STUDY TITLE: The Dementia Sibling Study: Brothers and sisters sharing caregiving responsibilities

INVESTIGATORS:
Lily Nguyen, MScOT(c): lilyht.nguyen@mail.utoronto.ca
Genalyn Elane, MScOT(c): genalyn.elane@mail.utoronto.ca

SUPERVISORS:
Jill Cameron, PhD, jill.cameron@utoronto.ca
Nira Rittenberg, OT Reg. (Ont.), NRittenberg@baycrest.org

You are being asked to take part in a research study. Before agreeing to participate in this study, it is important that you read and understand the following explanation of the proposed study procedures. Please contact the study investigators before signing the consent form, if you have any questions or concerns.

Purpose and Objectives
The purpose of this study is to explore how caregiving responsibilities are shared between adult daughters and sons in the care of a parent with dementia. We hope to better understand the needs of family caregivers.

Procedures
You and your sibling will be asked to individually fill out a survey that should take approximately 30 – 45 minutes.This survey will ask you about your experiences regarding your caregiving role and how you share responsibilities with your sibling. The questions include rating scales and short answers. We would like you to create an alphanumeric code from your parent with dementia's information so that your data may be matched with your sibling. To create the code, you and your sibling will need your parent with dementia’s month and year of birth, the first letter of their street address, and the first letter of their first name.
Risks
There is a possibility that reflecting on the experiences of providing care to your parent and sharing responsibilities with your sibling may be upsetting. Should you feel any discomfort while completing the survey, you may exit the survey at any time and skip any questions. There will also be a list of resources for caregivers to access once exiting or completing the survey.

Benefits
Using an outlet to express and share your experiences may benefit you. Although you may not directly benefit from the results of this study, you may benefit from knowing that your participation can contribute to enhancing supports for caregivers who take on the parent care role in the future.

Confidentiality
Any information that is collected from you online for the purposes of the study will be stored securely at the University of Toronto. Only the study team and the people at the University of Toronto Research Ethics Boards will be allowed to look at these records. After the 7-year period, all electronic and physical information will be destroyed by Dr. Jill Cameron. However, as the survey will be on the SurveyMonkey® servers, participants’ data will be stored on servers in the United States and are therefore subject to the PATRIOT Act.

If you decide to leave the study, during completion of the survey, your data will not be kept. If you decide to complete and submit the survey you have consented to have your data used in the study. At this point, your data cannot be withdrawn because no identifying information (name, date of birth, area of residence, etc.) was collected to associate with your survey responses.

Participation
Your participation in this study is voluntary. You can choose not to participate or leave the study at any time without penalty. In no way does providing consent waive your legal rights nor does it relieve the investigators, sponsors or involved institutions from their legal and professional responsibilities. You will not be compensated for time associated with study participation.

Questions
If you have any questions about your rights as a research participant, please contact the University of Toronto Office for Research Ethics at: ethics.review@utoronto.ca or 416-946-3273. The Office for Research Ethics is not involved with the research project in any way and calling them will not affect your participation in the study.

You can print this page for your records.

* Consent
I have read and understood the information provided about the research study and what participants must do.

 
5% of survey complete.

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