Survey Instructions and Consent

PURPOSE

Thank you for your interest in this survey. The purpose of this voluntary survey is to understand the out-of-pocket costs of unpaid caregiving, and the related consequences on caregiver income, employment/productivity and health. Out-of-pocket costs are care-related expenses that are not reimbursed (or paid) by any private insurance plans or covered by the Ontario Health Insurance Plan (OHIP). This survey also seeks to understand how COVID-19 has impacted caregiving expenses, income, employment and health.

ELIGIBILITY

To be eligible to participate, you must:

  1. Be an unpaid caregiver providing home care/support on a fully voluntary basis for one or more individuals (e.g. family members, friends or neighbours) with a long-term (over 3 months) physical and/or mental health condition or age-related decline.
  2. Be living in Ontario
  3. Be 16 years of age or older

If you are not eligible, please consider sharing this invitation with anyone you know who may be eligible and interested in participating.

PROCEDURE

In total, you can expect this survey will take you roughly 15-30 minutes to complete. Questions are largely rapid-fire, multiple-choice style questions. There are 10 short sections in total.

Given the length of this survey and your caregiving responsibilities, you may stop and return to this survey at any time. Simply hit "Save and Return Later" and follow the given instructions. Then, when you open the survey link, your answers will be saved upon your return.

You may view upcoming questions by clicking the "Next Page" button. To go back and change responses to questions in previous sections, click the "Previous Page" button, and not your browser's "back" button.

ACCESSIBILITY

This survey is in English. If you would like to participate but English is not your primary language, you are encouraged to find a trusted interpreter to assist you.

You require a valid internet connection to complete this survey. The survey can be completed on any desktop computer, tablet or mobile phone using any internet browser.

If you would prefer to conduct this survey over the phone, please email or phone the principal investigator, who will be happy to arrange a time at your convenience. Note: if you know of an unpaid caregiver who may be interested in participating in this survey but does not have email/internet access, they may contact me by phone to participate.

You may adjust the font size in the top right corner of the survey.

You may turn on the dictation function by clicking "Enable Speech" in the top-right corner of the survey.

PRIVACY AND CONFIDENTIALITY

This survey asks general questions about your income sources and estimated care expenses. Please answer these questions to the best of your knowledge. Your responses will not be linked to your taxes, so you are encouraged to refer to written records rather than responding from memory to ensure your responses are as accurate as possible.

On the survey itself, no personally identifiable information will be collected, so your data will be anonymous. Furthermore, as this survey platform is safe and secure, your data will be fully protected and only visible to the principal investigator.

Data will be securely stored on a digitally encrypted USB for five years for quality assurance purposes, then discarded in a safe and secure way to preserve your anonymity.

BENEFITS AND RISKS OF PARTICIPATING

You may benefit in knowing that findings from this survey will be published and will be publicly available. This research could be used by researchers and public policymakers to inform strategies that aim to protect unpaid caregivers from any financial risks of caring.

But, given the sensitive subject matter of this survey and the challenging times we are currently living in, survey questions may bring up negative emotions about your current caregiving experience. Questions concerning income, while general in nature, may seem very personal, so please answer questions you are comfortable answering (all questions are optional). However, you are encouraged to answer all the questions to the best of your ability as this will improve analysis and help to compare your results against other unpaid caregivers.

If you do experience any symptoms of distress, please consider contacting the toll-free, 24/7 Ontario Caregiver Helpline at 1-833-416-2273, or visiting this website for mental health resources near you.

WITHDRAWAL

You are also free to withdraw (remove) your participation by closing the survey and none of your data will be saved. If you do complete the survey but decide to withdraw afterward, you have until February 1, 2021 to do so. Please email the principal investigator noting you would like to withdraw your data.

RESULTS

At the end of the survey, you have the option of being emailed a summary of the findings of this study after results have been analyzed.

OPTIONAL RAFFLE

At the end of the survey, you will be invited to enter into a raffle to win 1 of 10 $20 cash prizes.

DISCLAIMER

This is an independent PhD study that is not affiliated with any single organization or government body. This study has been approved by the University of Toronto Research Ethics Board.

STUDY AND CONTACT INFORMATION

If you have any questions, please feel free to email unpaidcaregivingstudy@gmail.com. Alternatively, you may call or leave a voicemail at (416) 978-3591 and your call will be returned as soon as possible.

Principal Investigator: Husayn Marani, MSc, PhD(c)
Primary Supervisor: Dr. Gregory P. Marchildon, MA, JD, PhD
Institution: University of Toronto, Dalla Lana School of Public Health, Institute of Health Policy, Management and Evaluation (IHPME)
Sponsors: None
Conflicts of Interest: None

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