Families of Long-Term Care Home Residents

Informed Consent Form
 

You are invited to participate in a study about your experience of providing care for older people and about how you have maintained your well being during the COVID-19 pandemic. The purposes of this study are: 1) to understand how the pandemic affected the care of older persons, 2) to explore strategies that were used to provide relational care to older adults during the pandemic, and 3) to identify strategies that healthcare providers and families have used to keep themselves healthy.
 

This study is being conducted by Professors Sepali Guruge, Lori Schindel Martin in collaboration with co-investigators Dr. Souraya Sidani (Ryerson University), Dr. Veronique Boscart (Conestoga College), Dr. Sherry L. Dupuis (University of Waterloo), Dr. George Heckman (University of Waterloo) and Dr. Katherine McGilton (Toronto Rehabilitation Institute).  
 

If you have any questions about this study, you can contact the Principal Investigator, Dr. Sepali Guruge at sguruge@ryerson.ca or 416-979-5000 ext. 554964, or the Co-Principal Investigator, Dr. Lori Schindel Martin at lori.schindelmartin@ryerson.ca or 416-979-5000 ext. 554257.
 

The Office of the Vice-President for Research and Innovation (OVPRI: 2020 Ryerson COVID-19 SRC Response Fund) has provided funding for this study. This study has been reviewed and approved by the Research Ethics Boards of Ryerson University (REB#2020-553) and University of Waterloo (REB#43231).
 

Who will be asked to participate in this study?

A total of 100 people, including 50 Long-Term Care Home health care providers and 50 LTC Home resident family members in Ontario who have worked directly with or supported older persons during the COVID-19 pandemic will be asked to participate in this study.
 

To be able to participate in this study, you should:

  1. Be a family member of an older person (> 65 years) currently living or has lived in a Long-Term Care Home in Ontario within the past 12 months, and
  2. Have access to a computer and the internet or a telephone.
     

You will have a choice to participate by completing an online survey or a telephone/Zoom interview. Participation through either approach involves answering three sets of questions:

  • The first set of questions is about yourself. For example, you will be requested to report on your age, gender, and work experience.
  • The second set of questions is about your experiences during the COVID-19 pandemic. The survey questions ask about your views of the relational care of older persons, the factors that affect how relational care is provided during the pandemic, how COVID-19 has changed your relationship with the older persons receiving care and how COVID-19 has changed relationships between you and the LTC Home in which your family member lives.
  • The third set of questions is about your personal experiences during the COVID-19 pandemic, and the strategies that you have used to maintain connections between you and your older family member and to maintain you and your older family member?s physical and mental health.

The survey or interview will take about 30-45 minutes of your time to complete. Please choose an interview location that ensures both aural and visual privacy.
 

Participating in this study may not benefit you directly, but your answers will help us to come up with ways to improve services or caring of older persons in long-term care homes, and to better prepare healthcare providers for similar situations, should they occur.
 

There is minimal risk of participating in this study. You may find answering some of the questions or remembering incidents of COVID-related care upsetting. We encourage you to pace yourself and/or take a brief break from the survey. You may also close your web browser at any time if you do not wish to continue your participation. You can also access a list of online mental health care resources on the project website at www.agingrelationalcare.ca.
 

You may be concerned that recruitment by a colleague or a professional organization may affect your relationship with the professional body or your colleagues. Your participation is completely voluntary and confidential, and no professional body or colleague will know of your participation in the study.
 

The investigators will keep your information strictly confidential. If you choose to participate through the online survey, your answers will be collected using Opinio which is a secure website housed at Ryerson. Firewalls are in place to prevent data breaches. In the remote possibility of a data breach, this would be dealt with according to Ryerson policy by the Ryerson IT security system. If you choose to participate through Zoom, we will provide you with a unique Zoom meeting link that will be password protected. If you choose to participate through telephone, we will call you at the preferred number using a secure telephone connection.
 

Participation in this study is voluntary. Your choice of whether to participate or not will not influence your future relations with the researchers, with Ryerson University, or with health care organizations. Even if you decide to participate, you can skip any questions you do not want to answer whether your responses are recorded online or during an interview. You can stop your online participation altogether at any time without penalty by closing the survey web browser. If you decide to stop participating, any data that you do not delete from your survey prior to closing the web browser will be available to the researchers for analysis. Opinio does not record the IP address of online survey participants, so we will not be able to identify which survey belongs to which participants in order to delete the data submitted by a particular participant.
 

In the case that you are participating in a telephone or Zoom interview and wish to stop participation altogether and withdraw from the study, the interviewer will immediately stop the interview and delete the recording. In the case that you do not want to continue the interview, but wish the data you have provided to be considered as a part of the study, the interviewer will simply stop the recording and end the interview.
 

For either method of participation, the data collected will be de-identified, personal information will be removed and at no point in time will the researchers link your data to your identity.
 

Privacy and Confidentiality. The information you share with us if you participate in this study will be kept completely confidential to the full extent of the law. This survey is being conducted on Opinio, which does not collect or include individuals? IP addresses or time stamps in its reports. Thus, all data submitted by participants are de-identified and will be automatically uploaded to an aggregated data set for analysis. The audio-recorded telephone/Zoom interviews will be stripped of any identifying information during the transcription process. Only the researchers and research assistants will have access to the survey and interview data files. 
 

Your name and contact information will be kept confidential. This information will be stored separately from your questionnaire/interview and consent form. Your name and contact information will not be linked to your survey/interview. Your name will not appear in any paper or presentation resulting from this study. However, with your permission, quotations may be used with a pseudonym in place of your real name. Your contact information will be destroyed as soon as you confirm receipt of your honorarium.

If you are accessing this survey via a public form like our Facebook or Twitter sites, please know that we have disabled the comments features on these websites to protect your identity.
 

Data Storage

All online survey responses as well as interview audio-recordings and transcript responses will be encrypted and stored on Ryerson University?s Google drive. All interview audio-recordings will be destroyed immediately after transcription. All other data files will be kept for five years. After that, the research team will destroy all the data from this study. Digital data will be destroyed from the shared research team drive in consultation with Ryerson Computing and Communications Services.
 

Dissemination of study findings

Study findings will be presented in summary form, and your name will not be used in any report. The study findings will be used for publications and presentations only and will also be reported to the funder.
 

If you would like to receive a copy of the final report, you can check the project website at www.agingrelationalcare.ca.
 

Honorarium

You will receive a $50 honorarium as a token of appreciation for your time and to address any undue burden that you may have experienced because of your participation in this study. At the end of the online survey, you will be asked to provide your name and email address to receive the honorarium. This information will be collected from the online survey, separately from the responses you provide to the questionnaire, and will be encrypted and stored as a password-protected file on Ryerson University?s Cloud drive. At the end of the telephone/Zoom interview, the recording will be stopped, and you will be asked to provide your name and email or mailing address to receive the honorarium. If you choose to provide this information, the RA will record it in a separate digital text file which will be encrypted and stored as a password-protected file on Ryerson University?s Cloud drive. You will be asked to provide your name and email address to receive the honorarium, which will be made by cash e-transfer. For those who have no online banking accounts, we will send the honorarium via surface mail at a mailing address you provide. If you decide to provide your name and email or surface mail address, this information will be stored separately from the survey or interview data. The research team will not link your name with your survey or interview responses. Your name and email and/or surface mail address will be destroyed as soon as you have indicated to the research team that you have received the honorarium.
 

QUESTIONS ABOUT THE STUDY:
If you have questions about the research study, please feel free to contact the research assistant at any time at ARC_Covid19@ryerson.ca. Alternatively, you can also contact the Principal Investigator or Co-Principal Investigator of this study; their contact information is given on page 1 of this consent form.

 

This study has been reviewed by the Ryerson University Research Ethics Board. If you have questions regarding your rights as a participant in this study, please contact:

Research Ethics Board, Ryerson University

c/o Office of the Vice President, Research and Innovation

1 Dundas Street West

Toronto, ON M5B 2K3

Tel: 416-979-5042

Email: rebchair@ryerson.ca      
 

By consenting to participate in this study, you are not giving up any of your legal rights.

If you have read this consent form and agree to participate using the online survey please click the CONSENT button below and your web browser will connect you with the survey. 

Clicking the CONSENT button indicates that you have read the information in this agreement. Clicking CONSENT also indicates that you agree to participate as a volunteer in this research study and have been informed that you can change your mind and stop completing the survey or participating in a telephone/Zoom interview at any time. By clicking CONSENT, you are not giving up any of your legal rights. 

1. PERMISSION TO USE OF DE-IDENTIFIED QUOTATIONS
Checking this box indicates that you are giving consent to the use of anonymous quotations in any publication, presentation, or report that comes out of this research.  
2. REQUEST FOR RESEARCH STUDY REPORT SUMMARY
If you check this box, you will receive a summary of the research findings through surface mail. In order to do this, we will need your mailing address. This information will be stored separately from your survey data and will not be linked to your survey responses.  
 Name and mailing address:

After completing the survey or the telephone/Zoom interview, you will be asked to submit your name and email address so that we can send you an e-cash transfer in recognition of your contributions to this study. If you do not have an online bank account, we will send the honorarium via surface mail

Please print or save a copy of this consent form for your records.

If you decline consent for your participation, either exit the online study site by closing your web browser or do not return a completed form to the study assistant.